Lung Cancer Australian Study PEEK Volume 1 Issue 8, January 2019

2018 KNOWLEDGE PA TIENT EXPEC TA TIONS EXPERIENCE

PEwww.cc-dr.orgE K

Lung cancer Australian Study PEEK Volume 1 Issue 8, January 2019

1 This study was generously sponsored by AstraZeneca Australia. AstraZeneca provided arm’s length sponsorship for the Centre for Community-Driven Research to implement the PEEK protocol in bladder cancer. The sponsor had no input into the methodology, data collection, data analysis of reporting. The International Centre for Community-Driven Research team for this study included: Catherine Holliday Anne Holliday Josephine Byrne Hunter Baggen Vanessa Brunelli Jill Wilson Katriona Smith Daniel Martino-Burke

CCDR would like to thank each and every person that participated in this PEEK study. A special thank you also to our study partners Love and Light Support Group, Changing Lung Cancer, Love our Lungs and Lung Foundation Australia.

We dedicate this PEEK study in lung cancer to Belinda Jones and Jay Silva.

2 Contents

Summary of Results 4

Section 1: Introduction and methodology 29

Section 2: Demographics 38

Section 3: Symptoms and diagnosis 85

Section 4: Decision-making 111

Section 5: Treatment 126

Section 6: Communication and information 171

Section 7: Care and support 221

Section 8: Quality of life and experience in the health system 248

Section 9: Expectations and Messages 275

Section 10: Advice 300

Section 11: Discussion 307

Section 12: What’s next? 322

3 Summary

Summary

Lung Cancer 2018 Australian PEEK Study Summary Executive summary Characterisation of this study population: In this PEEK study, more women than men participated. There was an even number of participants with a high school or trade education compared with a university education and at ratio of 5:3 in relation to participants from a higher socioeconomic group compared to a lower socio-economic group. There were also more from metropolitan areas, and the majority of participants were under 54. Participants were included from all stages of lung cancer, with half of all participants having stage IV lung cancer. These demographics should always be taken into consideration when interpreting the results of this study. The most common symptoms that lead participants in this study to seek a diagnosis was breathing difficulties, a persistent cough, and having a pain in their back. However, more than 10% of this PEEK study population had no symptoms before being diagnosed. More than half of the participants were diagnosed within 6 months of noticing symptoms, however there were still some participants that had more than a year from noticing symptoms until diagnosis. Most participants either had no support or not enough support at diagnosis. The participants had a range of treatments, including surgery, chemotherapy, immunotherapy and radiation. For participants to know that their treatment was working, they needed to see evidence of stable disease or a reduction in disease, or a reduction in side effects. Almost a third of participants had taken part in a clinical trial for lung cancer, and more participants had discussions about clinical trials than participants that did not. The most common themes in treatment decision making were considering the side effects of treatment, considering efficacy/evidence of the treatment and quality of life. Less frequently, participant described primarily following the advice of their clinician. Participants in this PEEK study accessed most of their information from Australian charities, online forums, the internet, face to face support groups, and medical journals. The preferences of information format were described as talking to a healthcare professional with or without written information, online information, and apps (complementary to other methods). Participants described that lung cancer had a negative impact on quality of life, this was mostly attributed to the emotional and physical impact of lung cancer including a reduced capacity for physical activity. Lung cancer had both a positive and negative effect on relationships, some participants describe strengthening relationships while others describe losing friends. Participants felt that their lung cancer created an additional burden to family due to extra responsibilities and mental/emotional strain. Care and support was primarily received from family and friends. Overall, participant reported having good communication with healthcare professionals, however there were gaps in information in relation to specific types of lung cancer and also, knowing where to go for information in a timely manner. There were also often variations in tumour stage sub-groups in relation to patient experience and expectations across a number of domains. The majority of participants in this study spoke about the negative impact on quality of life that lung cancer has had on their family and friends, and the ongoing stigma attached to the disease. In the future, this cohort of patients would like to see affordable treatment that had equitable access, in addition, they would like to see more targeted therapies particularly to reduce the impact of side effects. Participants would like to see future lung cancer education that addresses the stigma of lung cancer, and to educate the public in relation to the causes of lung cancer. Participants wanted professionals to be more forthcoming with information, wanting to know more about tumour biomarkers and/or sub-types of lung cancer, and wanting to know more about current and emerging treatments, specific to various types of lung cancer. The most common recommendation for future care and support was for more support groups and support from charities, and this was followed by improved funding for staff involved in treating lung cancer, specifically lung cancer nurses.

The participants in this study described being grateful for access to treatment through Medicare and being grateful for the entire health system. Finally, was study population that felt that more equitable research and support services are needed, and importantly, ask the community to have compassion and empathy for those that have been diagnosed with lung cancer.

5 Lung Cancer 2018 Australian PEEK Study Summary Sub-group variations Go to the appendix attached to this section to see a matrix of sub-group variations

Table S.1: Sub-groups with the most to the least variations Sub-group n= As a % of all sub-group variations (n=271) Stage I and II 43 15.87 Stage III 42 15.50 Brain metastases 33 12.18 Regional/Remote 31 11.44 Other metastases 18 6.64 More pain 17 6.27 Stage I to III 16 5.90 No distant metastases 16 5.90 Mid to low SEIFA 15 5.54 Trade or high school 10 3.69 University 10 3.69 Stage IV 5 1.85 Older (55+) 5 1.85 Younder (18-54) 5 1.85 Worse fatigue/energy 2 0.74 Less pain 2 0.74 High SEIFA 1 0.37 Better fatigue/energy 0 0.00 Metropolitan 0 0.00

6 Lung Cancer 2018 Australian PEEK Study Summary Table S2: Sub-groups variations – themes with the most to the least variations

Themes with the most to least variations Number of themes Number of sub-group Number of possible Number of sub-group reported variations sub-group variations variations (%) (across 19 sub-groups) Message to decision-makers 3 12 57 21.05 Conversations about treatment 5 17 95 17.89 Expectations of future treatment 4 13 76 17.11 Considerations when making decisions 7 18 133 13.53 about treatment Adherence to treatment 4 10 76 13.16 Impact on relationships 6 14 114 12.28 Information accessed 7 14 133 10.53 What needs to change to feel like 4 7 76 9.21 treatment is effective Understanding of prognosis 7 12 133 9.02 Regular activities to maintain health 6 10 114 8.77 Preference for treatment: hospital 11 16 209 7.66 (chemotherapy) or home (pill form) Impact on quality of life 11 16 209 7.66 Understanding of disease at diagnosis 5 7 95 7.37 Activities to maintain mental health 8 11 152 7.24 Description of mild side effects 2 4 57 7.02 Health professional communication 9 12 171 7.02

Themes with the most to least variations Number of themes Number of sub-group Number of possible Number of sub-group reported variations sub-group variations variations (%) (across 19 sub-groups)

What patients are grateful for in the 8 10 152 6.58 Australian health system Burden on family 9 11 171 6.43 Does decision-making change over time 6 7 114 6.14 Care and support received 8 9 152 5.92 Symptoms leading to diagnosis 10 11 190 5.79 Description of severe side effects 8 7 152 4.61 Use of complementary therapies 10 7 190 3.68 Expectations of communication 7 4 133 3.01 Information that has not been helpful 6 3 114 2.63 Timing of information 4 2 76 2.63 Support needed for treatment (pill 5 2 95 2.11 form) at home Expectation of future information 5 2 95 2.11 Expectations of future care and support 6 2 114 1.75 Information that has been helpful 5 1 95 1.05 Information preferences 5 1 95 1.05

7 Lung Cancer 2018 Australian PEEK Study Summary

Summary of results

Section 1: Introduction and methodology

Summary • Lung cancer is the fourth most diagnosed cancer in Australia for both men and women, in 2015, it was the fourth most common cause of death and the most common cause of cancer deaths. There were over 11,000 new cases of lung cancer in 2013, with more men (approximately 6,600) than women (approximately 4,500) diagnosed. In 2014, more than 8000 people in Australia died from lung cancer, nearly 5000 of these deaths were in men. The survival rates from lung cancer are low, with less than half (41.6%) of those diagnosed surviving for one-year, and less than 1 in 6 surviving for five years. • • The risk factors for lung cancer include smoking tobacco, alcohol consumption, workplace/occupational exposure, ionising radiation, air pollution, passive smoking, family history of lung cancer, lung disease and medical/pharmaceutical medicines1,4. Symptoms of lung cancer include persistent cough, coughing up blood, chest pain, unexplained weight-loss, loss of appetite, shortness of breath, fatigue, ongoing chest infections, some patients will present with symptoms from metastatic disease such as bone pain, jaundice or abdominal pain. • • Patient Experience, Expectations and Knowledge (PEEK) is a research program developed by the International Centre for Community-Driven Research (CCDR). The aim of PEEK is to conduct patient experience studies across several disease areas using a protocol that will allow for comparisons over time (both quantitative and qualitative components). PEEK studies give us a clear picture and historical record of what it is like to be a patient at a given point in time, and by asking patients about their expectations, PEEK studies give us a way forward to support patients and their families with treatments, information and care. • In this PEEK study, 80 people with NSCLC throughout Australia participated in the study that included a structured interview and quantitative questionnaire. This study in NSCLC is the largest mixed methodology study in Australia in the past five years. In addition, PEEK is a comprehensive study covering all aspects of disease experience from symptoms, diagnosis, treatment, healthcare communication, information provision, care and support, quality of life, and future treatment and care expectations.

8 Lung Cancer 2018 Australian PEEK Study Summary

SF36 scores by stage • The lung cancer stage of disease was described as those with early or stages I or II disease (N=17, 21.25%), those with invasive or stage III disease (N=17.00, 21.25%), and those with advanced or stage IV disease (N=46, 57.50%). • Participants with stage IV lung cancer had median scores for the “SF36 Physical function” scale that were in the second highest quintile, indicating good physical function. The median score was significantly higher than those with Stage I and II lung cancer, where the median score was in the middle of the scale indicating moderate physical function. • Participants with stage IV lung cancer had mean scores for the “SF36 General health” scale that were in the middle of the scale indicating moderate general health. The mean score was significantly higher than those with stage I and II, and stage III lung cancer which were both in the second lowest quintiles indicating poor general health. SF36 scores by distant metastases • Distant metastases was described as those that had disease with distant metastases (excluding those with spread to lymph nodes only) (N=46, 57.50%) compared to those no distant metastases (N=34, 42.50%). • Those with distant metastases had a median score for the “SF36 Physical functioning” scale that was in the second highest quintile, indicating good physical functioning. The median score was significantly higher than those with no distant metastases, that were in the middle of the scale, indicating moderate physical functioning. • Those with distant metastases had a median score for the “SF36 Role functioning/physical” scale that was in the second highest quintile, indicating good role functioning due to physical health. The median score was significantly higher than those with no distant metastases, that were in the lowest quintile, indicating very poor role functioning due to physical health. • Those with distant metastases had a median score for the “SF36 Emotional well-being” scale that was in the second highest quintile, indicating good emotional well-being. The median score was significantly higher than those with no distant metastases, that were in the middle of the scale, indicating moderate emotional well- being. • Those with distant metastases had a median score for the “SF36 General health” scale that was in the middle of the scale, indicating moderate general health. The median score was significantly higher than those with no distant metastases, that was in the second lowest quintile, indicating poor general health. • Those with distant metastases had a median score for the “SF36 Health change” scale that was in the middle of the scale, indicating moderate scores. The median score was significantly higher than those with no distant metastases, that were in the second lowest quintile, indicating poor scores. SF36 scores by Brain metastases • Brain metastases was described as those with brain metastases (N=22, 27.50%) were compared to those with other distant metastases (excluding those with spread to lymph nodes only) (N=24, 30.00 %), and those with no distant metastases (N=34, 42.50%). • Those with brain metastases and those with other distant metastases had median scores for the “SF36 Physical functioning” scale that were in the second highest quintile, indicating good physical functioning. These median scores were significantly higher than the median score for those with no distant metastases, which was in the middle of the scale indicating moderate physical functioning. • Those with brain metastases and those with other distant metastases had median scores that were significantly higher than those with no distant metastases for the “SF36 Emotional well-being” scale. The median scores for brain metastases, and other distant metastases, were in the second highest quintile, indicating good scores. The median score for no distant metastases was in the middle of the scale indicating a moderate score. • Those with brain metastases and those with other distant metastases had median scores for the “SF36 General health” scale that were in the middle of the scale, indicating moderate general health. These median scores were significantly higher than the median score for those with no distant metastases, which was in the second lowest quintile indicating poor general health. SF36 scores by Energy/fatigue • Energy/fatigue was described as those with a higher than average score for the cohort in the “SF36 energy/fatigue” scale, better energy/fatigue (N=42, 52.50%) compared to those with an average or less score, worse energy/fatigue (N=38, 47.50%)

9 Lung Cancer 2018 Australian PEEK Study Summary

• The “SF36 Emotional well-being” mean score for participants with better energy/fatigue was in the second highest quintile indicating good emotional well-being. The mean score was significantly higher than the mean score for participants with worse energy/fatigue which was in the middle of the scale indicating moderate emotional well-being. • The “SF36 physical functioning”, “SF36 Social functioning”, and “SF36 Pain” median scores for participants with better energy/fatigue were in the second highest quintile indicating good physical functioning, social functioning and less pain. These scores were significantly higher than the median scores for participants with worse energy fatigue which were in the middle of the scale, indicating moderate physical functioning, social functioning and moderate pain. • The “SF36 Role functioning/physical” median score for participants with better energy/fatigue was in the second highest quintile indicating good role functioning due to physical health. These scores were significantly higher than the median score for participants with worse energy/fatigue which was in the lowest quintile indicating very poor role functioning due to physical health. • The “SF36 Role functioning/emotional” median score for participants with better energy/fatigue was in the highest quintile indicating very good role functioning due to emotional problems. This was significantly higher compared to and the median score for participants with worse energy/fatigue which was in the second lowest quintile indicating poor role functioning due to emotional problems. • The “SF36 General health”, and “SF36 Health change”, median scores for participants with better energy/fatigue were in the middle of the scale, indicating moderate general health, and moderate health change. These scores were significantly higher compared to and the median score for participants with worse energy/fatigue which was in the second lowest quintile indicating poor general health, and poor health change. SF36 scores by Pain • Pain was described as those that scored above average for the cohort in the SF36 Pain scale, less pain (N=48, 60.00%) compared to those that scored average or below, more pain (N=32, 40.00%). • The “SF36 Energy/fatigue” mean score for participants with less pain was in the in the middle of the scale indicating moderate energy/fatigue. These scores were significantly higher compared to the mean score for participants with more pain was in the second lowest quintile indicating poor energy/fatigue. • The “SF36 physical functioning”, and “SF36 Social functioning”, median scores for participants with less pain were in the second highest quintile indicating good scores. These scores were significantly higher compared to participants with more pain with median scores in the middle of the scale, indicating moderate scores. • The “SF36 Role functioning/physical” median score for participants with less pain was in the second highest quintile indicating good role functioning due to physical health. These scores were significantly higher compared to and the median score for participants with more pain which was in the lowest quintile indicating very poor role functioning due to physical health. • The “SF36 Role functioning/emotional” median score for participants with less pain was in the highest quintile indicating very good role functioning due to emotional problems. These scores were significantly higher compared to and the median score for participants with more pain which was in the lowest quintile indicating very poor role functioning due to emotional problems. • The “SF36 General health”, and “SF36 Health change”, median scores for participants with less pain were in the middle of the scale, indicating moderate general health, and moderate health change. These scores were significantly higher compared to and the median score for participants with more pain which was in the second lowest quintile indicating poor general health, and poor health change. SF36 scores by gender • The gender of participants, females (N=66, 82.50%) were compared with males (N=14, 17.50%). • No significant differences were observed between males and females for any of the SF36 scales SF36 scores by age • The age of the participants, those that were 55 and older, older (55 and older) (N=36, 45.00%) were compared with those that were aged between 18 and 54, younger (18 to 54) (N=44, 55.00%). • No significant differences were observed between older and young participants for any of the SF36 scales SF36 scores by location

10 Lung Cancer 2018 Australian PEEK Study Summary

• The location of participants was evaluated by postcode using the Australian Statistical Geography Maps (ASGS) Remoteness areas, those living in a metropolitan area, metropolitan (N=65, 81.25%) were compared to those living in regional/rural areas, regional or remote (N=15, 18.75%). • No significant differences were observed between those that live in metropolitan areas and those that live in regional or remote areas for any of the SF36 scales SF36 scores by education • Education status, between those with a university degree, university (N= 40, 50.00%), and those with trade or high school qualifications, trade or high school (N=40, 50.00%) • The “SF36 physical functioning”, median score for participants with university qualifications were in the second highest quintile indicating good physical functioning. These scores were significantly higher compared to participants with trade or high school qualifications with median scores in the middle of the scale, indicating moderate physical functioning. SF36 scores by Socio-Economic Indexes For Areas (SEIFA) • Socio-economic Indexes for Areas (SEIFA) scores range from 1 to 10, a higher score denotes a higher level of advantage. Those with a higher SEIFA score of 7-10 , high SEIFA (N=50, 62.50%) compared to those with a mid to low SEIFA score of 1-6, mid-low SEIFA (N=30, 37.50%). • The “SF36 Energy/fatigue” mean score for participants that lived in an area with a high SEIFA was in the in the middle of the scale indicating moderate energy/fatigue. These scores were significantly higher compared to the mean score for participants that lived in an area with a low SEIFA was in the second lowest quintile indicating poor energy/fatigue. • The “SF36 physical functioning” median score for participants that lived in an area with a high SEIFA was in the second highest quintile indicating good physical functioning. These scores were significantly higher compared to participants that lived in an area with a low SEIFA with a median score in the second lowest quintile, indicating poor physical functioning. • The “SF36 Role functioning/physical” median score for participants that lived in an area with a high SEIFA was in the in the middle of the scale, indicating moderate role functioning due to physical health. These scores were significantly higher compared to and the median score for participants that lived in an area with a low SEIFA which was in the lowest quintile indicating very poor role functioning due to physical health. • The “SF36 Social functioning”, and “SF36 Pain”, median scores for participants that lived in an area with a high SEIFA were in the second highest quintile indicating good social functioning, and less pain. These scores were significantly higher compared to participants that lived in an area with a low SEIFA with median scores in the middle of the scale, indicating moderate social functioning, and moderate pain. • The “SF36 General health” median score for participants that lived in an area with a high SEIFA was in the middle of the scale, indicating moderate general health. These scores were significantly higher compared to the median score for participants that lived in an area with a low SEIFA which was in the second lowest quintile indicating poor general health.

Section 3: Experience of symptoms and diagnosis

Experience of symptoms before diagnosis

The most common symptoms were back and/or shoulder pain (N=35, 43.75%), tired/lower energy levels than usual (N=31, 38.75%), and shortness of breath (N=29, 36.25%). The worst quality of life was experienced with recurring bronchitis or pneumonia (average = 2.81) in the life was distressing to life was a little distressing range. Back and shoulder pain had an average quality of life of 4.14 in the life was average to life was good range, tired/lower energy levels than usual (average = 3.94) and shortness of breath (4.38) were in the Life was a little distressing to life is average range.

Symptoms leading to diagnosis

11 Lung Cancer 2018 Australian PEEK Study Summary

The most common symptom leading to diagnosis was breathing difficulties, including shortness of breath (n=26, 32.50%). There were 19 participants (23.75%) who described having a persistent cough and 11 participants (13.75%) who described having a pain in their back. Other symptoms leading to diagnosis included chest pain (n=8, 10.00%) and coughing phlegm or blood (n=7, 8.75%).

Diagnostic pathway

Participants noted in the questionnaire the approximate date when they first noticed symptoms and then the approximate date when they were diagnosed. From the information reported, from those participants were an approximate time lapse could be made (N=80), the range of time between symptoms and diagnosis was from les than a week to 42 months.

Eleven participants (13.75%) had no symptoms before diagnosis. More than half of the participants were diagnosed within 6 months of noticing symptoms (N=48, 60.00%), 14 participants (17.50%) were diagnosed between 6 and 12 months after noticing symptoms, and seven participants (8.75%) were diagnosed after a year.

Costs at diagnosis

In the questionnaire, participants were asked to estimate the amount of out of pocket expenses they had for diagnostic tests and medical consultations. Twenty-seven participants (33.75%) had no out of pocket expenses, 19 participants (23.75%) spent less than $500, 7 participants (8.75%) spent between $501 and $1000, 14 participants (17.50%) spent more than $1000, the most spent was $3500. The remaining 13 participants were unable to recall how much they spent (16.25%).

The participants were then asked on the online questionnaire if the amount they spent was a burden, for almost half of the participants (N= 39, 48.75%), it was no burden at all, 12 (15.00%) participants found it extremely or moderately significant burden, and 29 (36.25%) participants found it a somewhat or slightly significant burden.

Understanding of disease at diagnosis

Participants were asked how much they knew about lung cancer at diagnosis. There were 58 participants (72.50%) that described knowing nothing or very little about lung cancer at diagnosis and this was the most common theme. There were 17 participants (21.25%) noting that they thought lung cancer was only related to smoking when they were diagnosed and 12 participants (15.00%) that described their understanding was that lung cancer is associated with a poor prognosis or that it is a terminal condition.

Support at diagnosis

In the questionnaire, participants were asked whether they felt supported at the time of diagnosis. There were 50 participants (62.50%) that indicated that they had no support at diagnosis, while 16 participants (20.00%) noted that they had enough support. An additional 14 participants (17.50%) indicated that they had some support but that it was not enough.

In relation to sub-group variations, those with stage I and II lung cancer responded that they had “no support” (52.94%) less often than the general cohort (62.50%); and those that had Stage III lung cancer responded that they had “no support” (76.47%) more often than the general cohort (62.50%). All other subgroups followed similar levels of support to those of the entire cohort.

Diagnostic tests

12 Lung Cancer 2018 Australian PEEK Study Summary

Participants were asked on the online questionnaire what tests that they had received leading up to their diagnosis with lung cancer. The majority of participants had CT scans (N=75, 93.75%), biopsy (N=69, 86.25%), PET scans (N=59, 73.75%), and chest x-rays (N=54, 67.50%). Participants had between one and five diagnostic tests, most commonly three tests (N=30, 37.50%) or four tests (N=37, 46.25%). The time from diagnostic test to diagnosis ranged from less than one week to 4 months. More than half of the participants waited less than one week (N=41, 51.90%), and the majority waited less than two weeks (N=64, 81.01%).

Conversations about genetic and biomarker tests

Participants were asked whether they had ever had a discussion about genetic tests or tests to see if there were biomarkers that might be relevant to their condition or treatment. There were nine participants (11.25%) that indicated that they had brought up the topic for discussion with their doctor and 30 participants (37.50%) that reported that their doctor had brought up the topic for discussion. There were also 41 participants (51.25%) that indicated that no one had ever spoken to them about this.

Experience of genetic tests

Participants were asked what their experience of, or interest in genetic and biomarker tests. Half of the participants noted that they had not had this test, but would like to (N=40, 50.00%). There were 28 participants (35.00%) that reported having this test and not paying out of pocket for it, 4 had this test as part of a clinical trial (5.00%), and six paid for this test themselves (7.50%), a total of 38 participants (47.50%) have had this test. There were 2 participants (2.50%) indicated that they had not had this test and were not interested in it.

Lung cancer biomarkers

Participants were asked if they had any particular lung cancer biomarkers, the most common response was “I’m not sure” (N=38, 47.50%). Forty-two participants (52.50%) identified they had biomarkers; 22 had ALK (27.50%), 17 had EGFR (21.25%) and 3 had ROS1 (3.75%). No participants identified more than one biomarker. Of the participants that described having a particular biomarker, seven had responded a question about genetic testing/biomarkers that “I have not had this test but would like to” and six of these had responded that “No one has ever spoken to me about this type of test”.

Understanding of prognosis

Participants were asked to describe what their current understanding of their prognosis was. There were two main themes including understanding prognosis in relation to survival rates and/or statistics (n=17, 21.25%) and that their tumour has been removed and/or there is no evidence of disease (n=17, 21.25%). There were 15 participants (18.75%) that did not know their prognosis and eight participants (10.00%) that understood that their cancer is terminal and incurable. Other themes included participants understanding of prognosis is that treatment is working, but they do not know their prognosis (n=7, 8.75%), treatment is working (good prognosis) (n=6, 7.50%) and treatment may be working now, but it is likely that it will stop working at some stage (n=6, 7.50%).

13 Lung Cancer 2018 Australian PEEK Study Summary

Section 4: Experience of health professional communication

Discussions about treatment

Participants were asked what they recalled being discussed in relation to treatment options when they were first diagnosed. The most common theme related to participants recalling being told that there was only one treatment plan available, with limited discussion about options. This was described by 36 participants (45.00%). The next most common theme was discussions about targeted treatment (n=20; 45.00%), followed by being recommendations of both radiation therapy and chemotherapy (n=15; 18.75%), and recommendations of surgery (n=15; 18.75%).

Decision-making

The most common theme was considering the side effects of treatment (n=28; 35.00%). This was followed by considering efficacy/evidence of the treatment (n=19; 23.75%) and quality of life (n=18; 22.50%). There were 17 participants (21.25%) that described primarily following the advice of their clinician and 14 participants (17.50%) that described considering the survival rate or chance of survival following treatment.

Changes in decision-making

There were 41 participants (51.25%) that felt as though the way they made decisions about treatment had changed over time, and 31 participants (38.75%) that described decision making not changing. This was primarily because they had always considered options and been assertive in decision-making. There were four participants (5.00%) that described not ever having a choice, and therefore could not say whether they had changed the way they made decisions, and four participants (5.00%) that were unsure.

Of those participants that felt as though the way they made decisions had changed, 25 participants (31.25% of the general population) attributed this change to being more informed, and eight participants (10.00% of the general population) attributed this to placing more emphasis on how treatment will impact aspects of their life.

Section 5: Experience of treatment

Discussions about Clinical Trials

In this PEEK study, 32.50% of all participants (N=26) describe not being spoken to about clinical trials, 17 (21.25%) participants brought up the topic with their doctor, and the doctors of 37 (46.25%) participants brought up the topic of clinical trials.

Twenty-three (28.75%) participants have taken part in a clinical trial, and 50 (62.50%) participants have not taken part in a clinical trial but would like if one was suitable for them. Seven (8.75%) participants have not taken part and do not want to.

Treatments experienced

Participants were asked in the questionnaire to identify the treatments that they had experienced. Forty-five (56.25%) had immunotherapy or targeted therapy, 44 (55.00%) participants had chemotherapy, 42 (52.50%) had radiotherapy and 35 (43.75%) had surgery.

Surgery

14 Lung Cancer 2018 Australian PEEK Study Summary

Thirty-five (43.75%) participants had surgery to treat or manage their lung cancer. Excluding biopsies, more than three quarters of those that had operations had a single operation (N=27, 77.14%%), four (11.43%) participants had two operations, two (5.71%) participants had three operations, and two (5.71%) participants had four or more operations. The most common procedure was a lobectomy (N=17, 35.42%), followed by removal of lymph nodes (N=14, 29.17%) and wedge resection (N=10, 20.83%). The majority of operations were open (N=35, 70.83%).

Participants were asked (within the questionnaire), to rate their quality of life on a scale of 1 to 7, following their operation (with 1 being ‘Life was very distressing and 7 being ‘Life was great’). Quality of life scores ranges from 1 to 4, with a mean score of 1.90, that is, in the ‘Life was distressing’ range. A second follow-up question was asked in relation to how effective the participant felt the procedure was on a scale of 1 to 5 (with 1 being ineffective and 5 being very effective). Effectiveness scores ranged from 2 to 5, with a mean score of 4.1, in the ‘Effective’ range.

By procedure type, those who had a wedge resection reported an average quality of life score of 1.60, and those who had a lobectomy reported an average score of 1.88, both in the life was very distressing range. Those who had a lymph node removal reported an average quality of life score of 2.07, in the life is distressing range. The average effectiveness was reported as 4.10 for those that had a wedge resection, and as 4.21 for those with lymph node removed, both in the effective range. The average effectiveness of those that had a lobectomy was 3.88, in the moderately effective range.

Pain was the most commonly reported side effect from wedge resections (N=7, 70.00%), lymph node resections (N=13, 92.86%) and lobectomies (N=14, 82.35), followed by fatigue from wedge resections (N=4, 40.00%), lymph node resections (N=10, 71.43%) and lobectomies (N=13, 76.47), and breathlessness from wedge resections (N=5, 50.00%), lymph node resections (N=9, 64.29%) and lobectomies (N=11, 64.71).

Chemotherapy

Forty-four participants (55.00%) reported having chemotherapy to treat or manage lung cancer. The most common types of chemotherapy reported were cisplatin (N=24, 54.45%) and carboplatin (N=21, 47.73%). Participants had between one and seven regimens, with a median of two regimens. The effectiveness of chemotherapy overall was rated in the moderately effective to effective range, and the quality of life while on chemotherapy was rated as in the “life was distressing” range. Fatigue was the most commonly reported side effect of chemotherapy, with 38 (86.36%) participants that had chemotherapy reporting it as a side effect. “Chemo brain” was the next most commonly reported side effect (N=28, 63.64%), followed by constipation (N=26, 59.09%)

The average quality of life for those who had cisplatin was 2.17, in the “life was distressing range”. The average effectiveness was rated at 3.33, in the moderately effective range. The most commonly reported side effects were fatigue (N=19, 79.17%), nausea and vomiting (N=16, 66.67%), “chemo brain” (N=16, 66.67%), and constipation (N=16, 66.67%). The average quality of life for those that had carboplatin was 3.00, in the ‘somewhat distressing’ range. The average effectiveness was 3.11, in the moderately effective range.

Immunotherapy

Forty-five participants (56.25%) reported having immunotherapy to treat or manage lung cancer. The most common types of immunotherapy reported were Tarceva (N=17, 37.78%) and Aletinib (N=16, 35.56%). Participants had between one and four regimens, with an average of 1.66 regimens. The average effectiveness of immunotherapy overall was 3.94, in the effective range, and the average quality of life while on immunotherapy was 4.86 in the “life was good” range. Fatigue was the most commonly reported side effect of immunotherapy, with 40 (88.89%) participants that had immunotherapy reporting it as a side effect. “Diarrhoea” was the next most commonly reported side effect (N=34, 75.56%), followed by nausea and vomiting (N=26, 57.78%)

The average quality of life for those who had Tarceva (N=17) was 4.00, in the “life was average” range. The average effectiveness was rated at 2.88, in the moderately effective range. The most commonly reported side effects were diarrhoea (N=17, 100.00%), skin and nail changes (N=17, 100.00%), and fatigue (N=15, 88.24%). The average quality of life for those that had Alectinib (N=16) was 5.56 ,in the ‘life was good” range. The average effectiveness

15 Lung Cancer 2018 Australian PEEK Study Summary

was 4.31, in the effective range, the most commonly reported side effects were fatigue (N=12, 75.00%), nausea and vomiting (N=7, 43.75%) and diarrhoea (N=7, 43.75%).

Radiotherapy

Forty-two (52.50%) participants had radiation therapy to treat or manage their lung cancer. Participants were asked (within the questionnaire), to rate their quality of life on a scale of 1 to 7, during the period they had radiotherapy (with 1 being ‘Life was very distressing and 7 being ‘Life was great’). Quality of life scores ranges from 1 to 6, with a mean score of 2.95, that is, in the ‘Life was average’ range. A second follow-up question was asked in relation to how effective the participant felt the treatment was on a scale of 1 to 5 (with 1 being ineffective and 5 being very effective). Effectiveness scores ranged from 1 to 5, with a mean score of 4.1, in the ‘Effective’ range. Fatigue was the most commonly reported side effect (N=32, 76.19%), followed by skin dryness or itching (N=18, 42.86%) and difficulty swallowing (N=17, 40.48%).

Clinical trial treatments

Nineteen participants (23.75%) had taken part in clinical trials for lung cancer. The average quality of life was reported as 4.42, in the “life was average” range, and the average effectiveness rated as 4.37, in the effective range. The most commonly reported side effects were diarrhoea (N=6, 31.58%), nausea and vomiting (N=5, 26.32%), skin and nail changes (N=5, 26.32%) and blood chemistry changes (N=5, 26.32%).

Impact of lung cancer on quality of life

Participants were asked (within the questionnaire), to rate the impact of lung cancer on their quality of life on a scale of 1 to 7 (with 1 being ‘Life was very distressing and 7 being ‘Life was great’). The average score was 2.68 in the life was a little distressing range.

Section 6: Information and communication

Information accessed

The most common responses were accessing information from Australian charities (n=37; 46.25%), and accessing information through online forums (n=36; 45.00%). There were 19 participants (23.75%) that described accessing information from Google (internet), 16 participants (20.00%) that described accessing information through face- to-face support groups and 15 participants (18.75%) that described accessing medical journals and/or research articles, including keeping up to date on clinical trials.

Information that has been helpful

There was a fairly even distribution in relation to the information that participants found helpful. This included talking to their doctor/specialist (n=14; 17.50%), information from charities (n=14; 17.50%), support groups or patient information days (n=12; 15.00%), online support groups (n=12; 15.00%) and information that is specific to the type of lung cancer they have (n=11; 13.75%).

Information that has not been helpful

16 Lung Cancer 2018 Australian PEEK Study Summary

The most common theme described by 15 participant (18.75%) was deciding for themselves what is not helpful, dismissing irrelevant information and avoiding information that is not credible. There were also 15 participant (18.75%) that described the statistics around survival, such as 5-year survival rate, as not being helpful, and ten participants (12.50%) that described other people giving their opinion as not being helpful. Other themes included old information as unhelpful (n=8; 10.00%) and Dr Google as being unhelpful (n=7; 8.75%).

Information preferences

Participants were asked whether they had a preference for information online, talking to someone, in written (booklet) form or through a phone App. Overall, the most common theme was talking to someone (n=51; 63.75%) which included participants that described talking to someone as first choice (n=27) and a preference for talking to someone plus online information (n=24). There were 17 participants (21.25%) that described a preference for online information, within this, eleven participants preferred this due to its accessibility. There were also seven participants (8.75%) that described appreciating apps (complementary to other methods).

Timing of information

The most common time that participants described being receptive to receiving information was at the time of diagnosis (n=28, 35.00%) and this was followed by participants describing being receptive to information following the shock of diagnosis (n=14; 17.50%). There were 11 participants (13.75%) that described not being receptive to information for months after diagnosis and eight participants (10.00%) that described being receptive to information continuously throughout their experience.

Health professional communication

Participants were asked to describe the communication that they had had with health professionals throughout their experience. The most common theme was that participants described having an overall positive experience (n=59; 73.75%) and 21 participants (26.25%) described an overall negative experience.

Where participants described a positive experience, this related to health professionals taking time to answer questions (n=13; 16.25%), health professionals being caring and supportive (n=13; 16.25%) and health professionals explaining treatment options/new treatments and/or research coming through (n=9; 11.25%). Where participants described a negative experience, this related to having enough support or time provided by health professionals to help patients understand information presented (n=12; 15.00%) and health professionals being insensitive (n=7; 8.75%).

Knowledge and confidence

• The Partners in Health questionnaire (PIH) measures an individual’s knowledge and confidence for managing their own health. The Partners in Health comprises a global score, 4 scales; knowledge, coping, recognition and management of symptoms, and adherence to treatment. A higher score denotes a better understanding and knowledge of disease.

17 Lung Cancer 2018 Australian PEEK Study Summary

Partners in health – overall score

• Overall, the participants scored in the top quintile for “Partners in health: knowledge” (median =28.00, IQR = 5.25), “Partners in health: recognition” and “Partners in health: management of symptoms” (median =21.50, IQR =5.25), “Partners in health: adherence to treatment” (median = 15.50, IQR = 2.00) and “Partners in health: total score” (median =81.50, IQR = 13.25), indicating very good scores. “Partners in health: coping “( mean = 16.23, SD = 4.37), scored in the second highest quintile indicating good coping.

Partners in health - by lung cancer stage

• The lung cancer stage of disease was described as those with early or stages I or II disease (N=17, 21.25%), those with invasive or stage III disease (N=17.00, 21.25%), and those with advanced or stage IV disease (N=46, 57.50%). • No statistically significant differences were observed between lung cancer stage groups for any PIH scale.

Partners in health – by distant metastases

• Distant metastases was described as those that had disease with distant metastases (excluding those with spread to lymph nodes only) (N=46, 57.50%) compared to those no distant metastases (N=34, 42.50%). • No statistically significant differences were observed between distant metastases groups for any PIH scale.

Partners in health – by brain metastases

• Brain metastases was described as those with brain metastases (N=22, 27.50%) were compared to those with other distant metastases (excluding those with spread to lymph nodes only) (N=24, 30.00 %), and those with no distant metastases (N=34, 42.50%). • No statistically significant differences were observed between brain metastases groups for any PIH scale.

Partners in health – by energy/fatigue

• Energy/fatigue was described as those with a higher than average score for the cohort in the SF36 energy/fatigue scale, better energy/fatigue (N=42, 52.50%) compared to those with an average or less score, worse energy/fatigue (N=38, 47.50%) • The “Partners in health: coping, median scores for participants with better energy/fatigue were significantly higher than those with worse energy fatigue, however all scores were in the second highest quintile for each group, indicating good coping for both groups. • The “Partners in health: recognition and management of symptoms”, and “Partners in health: total score” median scores for participants with better energy/fatigue were significantly higher than those with worse energy fatigue, however all scores were in the highest quintile for each scale, indicating very good recognition and management of symptoms, and very good knowledge and confidence for managing their own health, for both groups.

Section 7: Experience of care and support

18 Lung Cancer 2018 Australian PEEK Study Summary

Care coordination The Care Coordination questionnaire comprises a total score, 2 scales (communication and navigation), and a single question for each relating to care-coordination and care received. A higher score denotes better care outcome. • Overall the entire cohort had a median score of 8.0 for both “Care coordination: care coordination global score” (IQR = 4.00), and “Care coordination: quality of care global measure” (IQR = 2.00), which is in the second highest quintile, indicating good global measures for care coordination and quality of care. • The mean score for “Care coordination: navigation” (Mean = 26.20, SD=4.46) was in the second highest quintile, indicating navigation of care. • The scores for “Care coordination: communication” (Mean = 39.50, SD = 8.97), and (“Care coordination: total score (Mean = 65.70, SD = 11.80) were in the middle of the scale, indicating moderate communication, and moderate over all care coordination. Care coordination – lung cancer stage • The lung cancer stage of disease was described as those with early or stages I or II disease (N=17, 21.25%), those with invasive or stage III disease (N=17.00, 21.25%), and those with advanced or stage IV disease (N=46, 57.50%). • Participants with stage IV lung cancer had median score for the “Care coordination: quality of care global measure” scale that was in the highest quintile, indicating very good global quality of care. The median score was significantly higher than those with stage III lung cancer, where the median score was in the second highest quintile, indicating good global quality of care. Care coordination – by distant metastases • Distant metastases was described as those that had disease with distant metastases (excluding those with spread to lymph nodes only) (N=46, 57.50%) compared to those no distant metastases (N=34, 42.50%). • Participants with distant metastases had a median score for the “Care coordination: quality of care global measure” scale that was in the highest quintile, indicating very good global quality of care. The median score was significantly higher than those with no distant metastases, where the median score was in the second highest quintile, indicating good global quality of care. Care coordination – by brain metastases • Brain metastases was described as those with brain metastases (N=22, 27.50%) were compared to those with other distant metastases (excluding those with spread to lymph nodes only) (N=24, 30.00 %), and those with no distant metastases (N=34, 42.50%). • There were no statistically significant differences observed in any care coordination scales between those with brain metastases, other distant metastases, and no metastases. Care coordination– by energy/fatigue • Energy/fatigue was described as those with a higher than average score for the cohort in the SF36 energy/fatigue scale, better energy/fatigue (N=42, 52.50%) compared to those with an average or less score, worse energy/fatigue (N=38, 47.50%) • There were no statistically significant differences observed in any care coordination scales by energy/fatigue status. Care coordination – by pain • Pain was described as those that scored above average for the cohort in the SF36 Pain scale, less pain (N=48, 60.00%) compared to those that scored average or below, more pain (N=32, 40.00%). • The “Care coordination: Communication” mean score for participants with less pain was significantly higher than the median score for those with more pain. However, both of these scores were in the middle of the scale indicating moderate communication for both groups. • The “Care coordination: total score” mean score for participants with less pain was in the second highest quintile indicating good overall care coordination. This score was significantly higher compared to coordination.

19 Lung Cancer 2018 Australian PEEK Study Summary

• The “Care coordination: quality of care global measure” median score for participants with less pain was in the highest quintile indicating very good global quality of care. This score was significantly higher compared to participants with more pain with a median score in the second highest quintile, indicating good global quality of care. • The “Care coordination: Navigation” median score for participants with less pain was significantly higher than the median score for those with more pain. However, both of these scores were in the second highest quintile indicating good navigation. Care coordination – by gender • The gender of participants, females (N=66, 82.50%) were compared with males (N=14, 17.50%). • There were no statistically significant differences observed in any care coordination scales between males and females. Care coordination – by age • The age of the participants, those that were 55 and older, older (55 and older) (N=36, 45.00%) were compared with those that were aged between 18 and 54, younger (18 to 54) (N=44, 55.00%). • There were no statistically significant differences observed in any care coordination scales between older and younger participants. Care coordination – by location • The location of participants was evaluated by postcode using the Australian Statistical Geography Maps (ASGS) Remoteness areas, those living in a metropolitan area, metropolitan (N=65, 81.25%) were compared to those living in regional/rural areas, regional or remote (N=15, 18.75%). • There were no statistically significant differences observed in any care coordination scales between participants that live in metropolitan areas and those that live in regional or remote areas. Care coordination – by education • Education status, between those with a university degree, university (N= 40, 50.00%), and those with trade or high school qualifications, trade or high school (N=40, 50.00%) • There were no statistically significant differences observed in any care coordination scales between participants with university qualifications and those with trade or high school qualifications. Care coordination – by SEIFA • Socio-economic Indexes for Areas (SEIFA) scores range from 1 to 10, a higher score denotes a higher level of advantage. Those with a higher SEIFA score of 7-10 , high SEIFA (N=50, 62.50%) compared to those with a mid to low SEIFA score of 1-6, mid-low SEIFA (N=30, 37.50%). • There were no statistically significant differences observed in any care coordination scales between participants that live in areas with higher SEIFA scores and those that live in areas with lower SEIFA scores. Care and support received This question aims to investigate what services patients consider to be support and care services. The most common description of care and support was from family and friends (n=61; 76.25%). This was followed by receiving support through charities (n=29; 36.25%), support through clinical trials (n=20; 25.00%), support groups (n=16; 20.00%) and support through online portals including Facebook (n=10; 12.50%).

20 Lung Cancer 2018 Australian PEEK Study Summary

Section 8: Experience of quality of life Impact on quality of life Overall, there were 68 participants (85.00%) that described a negative impact on quality of life. The most common themes in relation to having a negative impact on quality of life included a negative impact on themselves and their family due to emotional and physical impact of lung cancer (n=44; 55.00%), and reduced capacity for physical activity (n=32; 55.00%). There were also 22 participants (27.50%) that described a negative impact the shock of diagnosis and having to tell family or friends. In contrast, there were 17 participants (21.25%) that described minimal impact on quality of life and seven participants (8.75%) that noted that their personal relationships had been strengthened. Regular activities to maintain mental heath The most common way that participants reported managing their mental and emotional health was by accessing a mental health professional such as a psychiatrist, psychologist or counsellor (n=35; 43.75%). There were 19 participants (23.75%) that described using coping strategies and 17 participants (21.25%) that described using mindfulness or meditation. The next most common themes included using physical exercise to manage emotional impact (n=13; 16.25%), having a positive outlook (n=11; 13.75%) and having family or friends who helped them manage their emotional health (n=11; 13.75%). Regular activities to maintain health The most common theme described by participants was being physically active (n=35; 43.71%) and this was followed by the importance of complying with treatment (n=24; 30.00%). There were 20 participants (25.00%) that described healthy diet and lifestyle, 13 participants (16.25%) that described the need to listen to their body and rest when needed, and 11 participants (13.75%) that described pacing themselves and accepting help. In relation to sub-group variations, participants with stage I and II lung cancer (64.71%) described physical activity, more frequently than the general population (43.75%), while those from regional or remote areas (26.67%) described this less frequently. Participants with stage I and II lung cancer (5.88%) described complying with treatment, less frequently than the general population (30.00%), while those with other metastases (41.67%) reported this more frequently. Participants with stage III lung cancer (11.76%), those with stage I to II lung cancer and no distant metastases (14.71%) and older participants (13.89%), described a healthy diet and lifestyle less frequently than the general population (25.00%), while those with brain metastases (40.91%) reported this more frequently. Participants with stage I and II lung cancer (5.88%) described listening to their body, less frequently than the general population (16.35%). Impact on relationships The most common theme described by participants was a positive effect on relationships where relationships were strengthened (n=41; 51.25%). This was however followed by negative effect on relationship with family and/or friends as it is hard for others to understand and navigate a different type of relationship (n=20; 25.00%) and friends 'dropping away’ (n=17; 21.25%). There were 15 participants (18.75%) that described the way they relate to others had changed, and 15 participants (18.75%) that described no effect on relationships. Burden on family Participants were also asked if their condition caused any additional burden on their family. The most common theme was there was an additional burden on family (n=60; 75.00%). Within this theme there were 20 participants (25.00%) that felt this was due to the extra duties or responsibilities their family members have had to take on, and 18 participants (22.50%) that felt this was due to the mental/emotional strain it places on their family. There were 20 participants (25.00%) that did not feel as though their condition was a burden on their family. This included 7 participants (8.75%) that thought it may be a burden in the future and six participants (7.50%) that did not require a lot of assistance.

21 Lung Cancer 2018 Australian PEEK Study Summary

Anxiety and fear of progression • The Fear of Progression questionnaire measures the level of anxiety people experience in relation to their conditions. The Fear of Progression questionnaire comprises a total score, with a higher score denoting increased anxiety. Overall the entire cohort had a mean total score of 37.00, which is a score in the middle of the scale. Fear of progression – by lung cancer stage • The lung cancer stage of disease was described as those with early or stages I or II disease (N=17, 21.25%), those with invasive or stage III disease (N=17.00, 21.25%), and those with advanced or stage IV disease (N=46, 57.50%). • There was no statistically significant difference observed in the fear of progression total score between participants with different stages of lung cancer Fear of progression – by distant metastases • Distant metastases was described as those that had disease with distant metastases (excluding those with spread to lymph nodes only) (N=46, 57.50%) compared to those no distant metastases (N=34, 42.50%). • Participants with no distant metastases had a mean score for the “Fear of progression total score” that was statistically significantly higher than those with distant metastases. However, both scores were in the middle of the scale indicating anxiety. Fear of progression – by brain metastases • Brain metastases was described as those with brain metastases (N=22, 27.50%) were compared to those with other distant metastases (excluding those with spread to lymph nodes only) (N=24, 30.00 %), and those with no distant metastases (N=34, 42.50%). • There was no statistically significant difference observed in the fear of progression total score between participants with brain metastases, other distant metastases, and no distant metastases. Fear of progression – by energy/fatigue • Energy/fatigue was described as those with a higher than average score for the cohort in the SF36 energy/fatigue scale, better energy/fatigue (N=42, 52.50%) compared to those with an average or less score, worse energy/fatigue (N=38, 47.50%) • There was no statistically significant difference observed in the fear of progression total score between participants with better energy/fatigue and worse energy/fatigue. Fear of progression – by pain • Pain was described as those that scored above average for the cohort in the SF36 Pain scale, less pain (N=48, 60.00%) compared to those that scored average or below, more pain (N=32, 40.00%). • Participants with more pain had a mean score for the “Fear of progression total score” that was statistically significantly higher than those with less pain. However, both scores were in the middle of the scale indicating moderate scores. Fear of progression – by gender • The gender of participants, females (N=66, 82.50%) were compared with males (N=14, 17.50%). • There was no statistically significant difference observed in the fear of progression total score between male and female participants. Fear of progression – by age • The age of the participants, those that were 55 and older, older (55 and older) (N=36, 45.00%) were compared with those that were aged between 18 and 54, younger (18 to 54) (N=44, 55.00%). • There was no statistically significant difference observed in the fear of progression total score between older (55 and older) and younger (18 to 54) participants. Fear of progression – by location

22 Lung Cancer 2018 Australian PEEK Study Summary

Section 9: Expectations of future treatment, care and support, information and communication Expectations of future treatment The most common theme was the importance of affordability of treatment, particularly in relation to equitable access (n=43; 53.75%), and this was followed by recommendations for more targeted therapies, particularly to reduce impact of side effects (n=19; 23.75%). There were 11 participants that recommended more investment in research to advance treatments in lung cancer (n=11; 13.75%). Expectations of future information The most common theme was that participants described wanting more done to address stigma or educate public in relation to causes of lung cancer (n=16; 20.00%) and this was followed by not having any recommendations as they were satisfied with information (n=15; 18.75%). There were 12 participants (15.00%) that described wanting to know where to access information and for health professionals to be more forthcoming with information, 11 participants (13.75%) that described wanting to know more about tumour biomarkers and/or sub-types of lung cancer, and 10 participants (12.50%) that described wanting to know more about current and emerging treatments, specific to various types of lung cancer. Expectations of future health professional communication The most common themes were that participants wanted clinicians to display more compassion/empathy or establish a connection with their patients (n=20; 25.00%) and equal to this was experiencing good communication from health professionals, therefore having no recommendation (n=20; 25.00%). There were 14 participants (17.50%) that described wanting clinicians to explain their diagnosis/prognosis/test results/treatment more clearly, and nine participants (11.25%) that described the importance of nurses or the need for specialist lung cancer nurse coordinator. Expectations of future care and support The most common recommendation was for more support groups and support from charities (n=17; 21.25%) and this was followed by improved funding for staff involved in treating lung cancer, specifically lung cancer nurses (n=13; 16.25%). There were eight participants (10.00%) that recommended more psychological support, eight

23 Lung Cancer 2018 Australian PEEK Study Summary

participants (10.00%) that recommended more opportunities for patients to connect with each other and eight participants (10.00%) that recommended improved practical/home support. Aspects of the Australian health system that patients are grateful for The most common theme was participants describing being grateful for access to treatment through Medicare (n=39; 48.75%) and this was followed by being grateful for the entire health system (n=32; 40.00%). There were 27 participants (33.75%) that were grateful for the health system being low cost/free and 12 participants (15.00%) that described being grateful for access to oncologists through Medicare. Symptoms/aspects of quality of life important for treatments

• Participants were asked about the value of access to treatments that reduce symptoms and improve quality of life even if they do not offer a cure. The majority of participants thought that it would be of very significant or significant value (n=73, 92.25%), six participants (7.50%) felt it would be of moderate or some value, and 1 participant (1.25%) felt it would be of no value. • Participants were asked to rank which symptoms/aspects of quality of life would they want controlled in a treatment for them to consider taking it. The most important aspects reported were pain, nausea and vomiting, and diarrhea; the least important were mouth ulcers, and hair loss. • The most import symptoms for those with advanced lung cancer were loss of appetite, and hair loss, compared to invasive disease and early lung cancer where the most important side effects were pain, and nausea and vomiting; by stage, mouth ulcers were least important to all subgroups, however for advanced stage, pain was the second least important side effect compared to the whole cohort where pain was the most important side effect. • By distant metastases, the most important for those with distant metastases were loss of appetite and hair loss, and similar to the entire cohort, the least important side effect was mouth ulcers for both those with distant metastases and those with no distant metastases. Similar to the entire cohort, those with no distant metastases, the most important side effects were pain and nausea. By brain metastases the symptoms and aspects of quality of life were similar to those for the entire cohort.

Values that are important to patients when making decisions

• Participants were asked to rank what is important for them overall when they make decisions about treatment and care. The most important aspects were financial costs to the participant and their family, safety of treatment/weighing up risks and benefits, and severity of side effects. The least important were ability to follow and stick to a treatment, and including family in decision-making.

Values that are important to patients when others are making decisions on their behalf

• Participants were asked to rank what is important for decision-makers to consider when they make decisions that impact treatment and care. The two most important values were quality of life for patients, and access for all patients to all treatments and services; the least important was economic value to government.

Message to decision-makers There were three key themes and the most common message was that there needs to be faster access to therapies for lung cancer (n=35; 47.75%). This was followed by the need for faster access to therapies for lung cancer through the government reimbursement process (n=32; 40.00%), and the need for more awareness to address stigma and increase compassion (n=27; 33.75%).

24 Lung Cancer 2018 Australian PEEK Study Summary

Section 10: Advice to other patients and families • The most common advice was to become more informed about your cancer (n=23; 28.75%) and this was followed by advice to become involved with online groups for people with your specific type of lung cancer (n=16; 20.00%). There were 14 participants (17.50%) whose advice was seek information about treatment, including second opinions, 13 participants (16.25%) whose advice was to ask a lot of questions/ write down questions for specialists, and 11 participants (13.75%) whose advice was to be mindful of your emotions and manage mental health.

25 Lung Cancer 2018 Australian PEEK Study Summary Sub-group variations: appendix

26 Lung Cancer 2018 Australian PEEK Study Stage I and II Stage III Stage IV Stage I to III Brain metastases Othermetastases Nodistant metastases Better fatigue/energy Worse fatigue/energy pain Less pain More Older(55+) Younder(18-54) Metropolitan Regional/Remote Tradeor high school University SEIFA High SEIFA low to Mid Subgroup variations by themes

Themes

Symptoms leading to diagnosis Participant describes breathing difficulties/wheezing or shortness of breath Participant describes persistent cough Participant describes having pain in their back Participant describes general chest pain Participant describes coughing up phlegm or blood Participant describes being not noticing any symptoms before diagnosis Participant describes having pain around the ribs Participant describes having pain around shoulders Participant describes being very tired Participant describes recurring chest infections/bronchitis Understanding of disease at diagnosis Participant describes knowing nothing or very little at all about lung cancer at diagnosis Participant describes thinking that lung cancer was only related to smoking at diagnosis Participant describes their understanding was that lung cancer is associated with a poor prognosis or that it is a terminal condition Participant describes knowing about lung cancer through a family member or friends having it Participant describes knowing about cancer from having a professional background in science, health or medicine Understanding of prognosis Participant's understanding of prognosis is in relation to survival rates and/or statistics Participant's understanding of prognosis is that their tumour has been removed and/or there is no evidence of disease (in remission) Participant does not know their prognosis Participant's understanding of prognosis is that their cancer is terminal and incurable Participant's understanding of prognosis is that treatment is working, but does not know prognosis Participant's understanding of prognosis is that treatment is working (good prognosis) Participant's understanding of prognosis is that treatment may be working now, but it is likely that it will stop working at some stage Conversations about treatment Participant describes being told one treatment plan with little discussion Participant describes discussing targeted treatment Participant describes being recommended both radiation therapy and chemotherapy Participant describes being recommended surgery Participant describes being told their cancer was inoperable Considerations when making decisions about treatment Participant describes considering the side effects Participant describes considering the efficacy/ evidence Participant describes considering quality of life Participant follows the advice of their specialist Participant describes considering the survival rate following treatment Participant describes considering the cost of the treatment Participant describes considering their family and the impact on them Does decision-making change over time Participant describes decision-making changing Participant describes decision-making not changing, primarily because they have always considered options and been assertive in making their own decisions. Participant describes not have any choice in treatment No response or unsure Participant describes decision-making changing as they are more informed Participant describes decision-making changing as they consider how it will impact aspects of their life Description of mild side effects Participant describes mild side effects as those that don't impact the ability to do everyday things/everyday living Participant describes mild side effects as those that do not last very long Description of severe side effects Participant describes severe side effects as those that impact the ability to do everyday things/everyday living Participant describes fatigue/exhaustion as a severe side effect Participant describes pain as a severe side effect Participant describes nausea as a severe side effect Participant describes vomiting as a severe side effect Participant describes severe side effects as those that required hospitalisation Participant describes severe side effects as those that can cause permanent damage, life threatening or organ damage Participant describes loss of lung function/difficulties breathing as a severe side effect Use of complementary therapies Participant describes not trying any complementary medicines Participant describes taking vitamins and supplements Participant describes having a specific diet Participant describes seeing a naturopath Participant describes taking natural home remedies, Manukau honey, Camomile, Alkaline drinks Participant describes trying to eat healthy and remain active Participant describes seeing a physiotherapist Participant describes seeing a Chinese herbalist Participant describes doing mindfulness meditation Participant describes doing yoga Adherence to treatment Participant describes continuing on treatment as long as it is effective/evidence that it is not working Participant describes taking the advice of their specialist Participant describes needing to see test or scan results Participant describes continuing on treatment as long as side effects are tolerable What needs to change to feel like treatment is effective Participant describes needing to see test or scan results (including reduction in tumour size) Participant describes needing to see a decrease in side effects of treatment Participant describes needing evidence of stable disease or no disease progression Participant describes trusting their doctors Preference for treatment: hospital (chemotherapy) or home (pill form) Preference is for a pill at home Preference is for chemotherapy at hospital Other, depends on the severity of treatment or doctor’s advice Preference for at home (Pill form) is based on reduced impact on everyday routine Preference for at home (Pill form) is based on ease of administration and less intrusive Preference for at home (Pill form) is based on the feeling that hospitals are depressing or not a good experience Preference for at home (Pill form) is based on causing less disruptions for the children Preference for at home (Pill form) is based on the support at home Preference is for hospital, as they can be monitored and tested Preference is for hospital, as there are others around for support Preference is for hospital, as they do not like taking pills Support needed for treatment (pill form) at home Participant describes needing someone to call (telephone) who is available Participant describes being well informed and having their own support services, confident (or are) to take medication at home Participant's main concern is in relation to managing side effects Participant describes needing clear instructions in relation to medication usage and what to expect in relation to potential adverse effects Participant describes needing someone to be physically available (immediately/quickly) if they needed help Information accessed Participant describes accessing information from Australian charities (Lung Foundation, Cancer Council; can be pamphlets) Participant describes accessing information through online forums (including Facebook) Participant describes accessing information from google (or generally internet) Participant describes accessing information through face-to-face support groups Participant describes accessing medical journals and/or research articles (also includes keeping up to date on clinical trials) Participant describes accessing information from their specialist Participant describes accessing information on the internet (International websites) Information that has been helpful Participant describes talking to their doctor/specialist as being particularly helpful Participant describes the information from charities as most helpful Participant describes support groups or patient information days as being particularly helpful Participant describes online support groups(including Facebook) as being helpful Participant describes information that is specific to the type of lung cancer they have Information that has not been helpful Participant describes deciding for themselves what is not helpful/dismissing irrelevant information/avoiding information that is not credible Participant describes the statistics around survival, like 5-year survival rate, as not being helpful Participant describes other people giving their opinion as not being helpful Participant describes old information as unhelpful Participant describes 'Dr Google' or generally search for information on the internet as not being helpful Participant doesn’t know of any unhelpful information Information preferences Participant describes talking to someone as first choice (may also like other options but talking is first/main thing spoken about) Participant describes a preference for talking to someone plus online information Participant describes a preference for online information due to its accessibility Participant describes appreciating apps - complementary to other methods Participant describes a preference for online information (no rationale provided) Timing of information Participant describes being receptive from the beginning (diagnosis) Participant describes being receptive to information after the shock of diagnosis Participant describes not being receptive for months post diagnosis Participant describes being receptive to information continuously throughout their experience/bit-by-bit so that it is digestible Health professional communication

Sub-group had a variation less than 10% KEY compared to the general cohort 27 Sub-group had a variation more than 10% compared to the general cohort Stage I and II Stage III Stage IV Stage I to III Brain metastases Othermetastases Nodistant metastases Better fatigue/energy Worse fatigue/energy pain Less pain More Older(55+) Younder(18-54) Metropolitan Regional/Remote Tradeor high school University SEIFA High SEIFA low to Mid

Themes

Participant describes an overall positive experience in relation to communication Participant describes a positive experience as health professionals have been able to take time to answer questions Participant describes a positive experience as health professionals have been caring and supportive Participant describes a positive experience due to health professionals explaining treatment options/new treatments and/or research coming through Participant describes a positive experience and being satisfied with communication as they have been able to access health professionals as needed Participant describes an overall negative experience in relation to communication Participant describes a negative experience due to not having enough support or time provided by health professionals to help patients understand information Participant describes a negative experience when health professionals have been insensitive (disclosing difficult information in an insensitive way) Participant describes a negative experience as participant felt as though they had to find information themselves Care and support received Participant describes support from family and friends Participant describes receiving support through charities Participant describes receiving support through peer support (Support group) Participant describes receiving support through peer support (Facebook and online portals) Participant describes accessing a psychologist Participant describes accessing domestic services/support Participant describes accessing a counsellor Participant describes challenges of family staying long-term Impact on quality of life Participant describes negative impact on QOL (Overall) Participant describes negative impact on QOL due to the emotional/psychological and physical strain on their family/partner Participant describes negative impact on QOL due to reduced capacity for physical activity Participant describes negative impact on QOL in relation to the shock of diagnosis and having to tell family or friends Participant describes negative impact on QOL due to fatigue associated with cancer or treatment, including no longer being able to work Participant describes negative impact on QOL due to anxiety related to ongoing treatment/monitoring for recurrence Participant describes negative impact on QOL due to worry re prognosis or inability to plan for future due to illness/treatment Participant describes negative impact on QOL of family due to financial impact of treatment/inability to keep working Participant describes negative impact on QOL during initial treatment Participant describes minimal impact on QOL Participant describes ways in which relationships have strengthened Activities to maintain mental health Participant describes consulting a mental health professional to manage emotional impact (psychiatrist/psychologist/counsellor) Participant describes coping strategies they use to help manage the emotional impact Participant describes using mindfulness or meditation to manage emotional impact Participant describes using physical exercise to manage emotional impact Participant describes how their positive outlook helps manage the emotional impact Participant reports how their family or friends have helped them manage the emotional impact Participant reports participating in support groups to help manage emotional impact Participant describes how their outlook had changed due to their illness experience Regular activities to maintain health Participant reports benefits of being physically active Participant reports importance of complying with the treatment regime Participant reports benefits of a healthy diet/lifestyle Participant reports benefits of listening to your body and resting when needed Participant reports benefits of pacing their activity, and letting others help them Participant reports benefits of meditation/mindfulness Impact on relationships Participant describes positive effect on relationship with family and/or friends: Relationships strengthened Participant describes negative effect on relationship with family and/or friends as it is hard for others to understand and navigate a different type of relationship Participant describes friends 'dropping away' Participant describes effect on way they relate to others/change in behaviour Participant describes no effect on relationships with family or friends Participant describes negative effect on relationship with partner: Additional pressure/stress Burden on family Participant does not feel that their condition is a burden on their family Participant feels that their condition is not a burden on their family at this stage, but likely to be in the future Participant feels that their condition is not a burden on their family as they've required little assistance Participant feels that their condition is a burden on their family Participant feels that their condition is a burden on their family due to the extra duties or responsibilities their family members have had to take on Participant feels that their condition is a burden on their family due to the mental/emotional strain it places on their family Participant feels that their condition was a burden on their family during the early stages of diagnosis/treatment Participant feels that their condition is a burden on their family due to financial strain treatment or inability to work has placed on their family Participant feels that their condition is a burden on their family due to the need to have others drive them around Expectations of future treatment Participant notes the importance of affordability of treatment, particularly in relation to equitable access Participant recommends more targeted therapies, particularly to reduce impact of side effects and how treatments are administered Participant recommends more investment in research to advance treatments in lung cancer Participant describes preferring oral treatment at home Expectation of future information Participant describes wanting more done to address stigma or educate public in relation to causes of lung cancer Participant does not have any recommendations/satisfied with information Participant describes wanting to know where to access information and for health professionals to be more forthcoming with information Participant describes wanting to know more about tumour biomarkers and/or sub-types of lung cancer Participant describes wanting to know more about current and emerging treatments, specific to various types of lung cancer Expectations of communication Participant describes wanting clinicians to display more compassion/empathy or establish a connection with their patients Participant describes experiencing good communication from health professionals/no recommendation Participant describes wanting clinicians to explain their diagnosis/prognosis/test results/treatment more clearly Participant describes importance of nurses or the need for specialist lung cancer nurse coordinator Participant describes wanting better provision of information in relation to diagnosis Participant describes importance of clinicians conveying hope to patients Participant describes wanting health professionals to stop perpetuating stigma of smoking Expectations of future care and support Participant's recommendation is for more support groups/charity support Participant's recommendation is for improved funding for staff involved in treating lung cancer – lung cancer nurses Participant's recommendation is for more psychological support, especially telephone-based Participant's recommendation is for more opportunities to connect with other patients Participant's recommendation is for improved practical or in-home support What patients are grateful for in the Australian health system What patients are grateful for in the Australian health system Participant describes being grateful for access to treatment (through Medicare) Participant describes being grateful for the entire health system Participant describes being grateful for the health system being low cost/free Participant describes being grateful for access to oncologists (through Medicare) Participant describes being grateful for access to hospital care (through Medicare) Participant describes being grateful for access to diagnostic tests (through Medicare) Participant describes being grateful for access to treatment in private hospital system Participant describes being grateful for access to specialists through the private health system Message to decision-makers Participant's message is that there should be equitable funding/more funding for lung cancer research Participant's message is that there needs to be faster access to therapies for lung cancer through the PBS Participant's message is that there is a negative stigma associated with lung cancer and more awareness is needed to drive compassion and equity

28 Section 1

Section 1 Introduction and methods

Lung Cancer 2018 Australian PEEK Study Section 1

Section 1: Introduction and methodology Summary • Lung cancer is the fourth most diagnosed cancer in Australia for both men and women, in 2015, it was the fourth most common cause of death and the most common cause of cancer deaths. There were over 11,000 new cases of lung cancer in 2013, with more men (approximately 6,600) than women (approximately 4,500) diagnosed. In 2014, more than 8000 people in Australia died from lung cancer, nearly 5000 of these deaths were in men. The survival rates from lung cancer are low, with less than half (41.6%) of those diagnosed surviving for one-year, and less than 1 in 6 surviving for five years. • • The risk factors for lung cancer include smoking tobacco, alcohol consumption, workplace/occupational exposure, ionising radiation, air pollution, passive smoking, family history of lung cancer, lung disease and medical/pharmaceutical medicines1,4. Symptoms of lung cancer include persistent cough, coughing up blood, chest pain, unexplained weight-loss, loss of appetite, shortness of breath, fatigue, ongoing chest infections, some patients will present with symptoms from metastatic disease such as bone pain, jaundice or abdominal pain. • • Patient Experience, Expectations and Knowledge (PEEK) is a research program developed by the International Centre for Community-Driven Research (CCDR). The aim of PEEK is to conduct patient experience studies across several disease areas using a protocol that will allow for comparisons over time (both quantitative and qualitative components). PEEK studies give us a clear picture and historical record of what it is like to be a patient at a given point in time, and by asking patients about their expectations, PEEK studies give us a way forward to support patients and their families with treatments, information and care. • • In this PEEK study, 80 people with NSCLC throughout Australia participated in the study that included a structured interview and quantitative questionnaire. This study in NSCLC is the largest mixed methodology study in Australia in the past five years. In addition, PEEK is a comprehensive study covering all aspects of disease experience from symptoms, diagnosis, treatment, healthcare communication, information provision, care and support, quality of life, and future treatment and care expectations.

30 Lung Cancer 2018 Australian PEEK Study Section 1 Introduction Lung cancer is the fourth most diagnosed cancer in NSCLC can is divided into 6 stages based on size of Australia for both men and women1, in 2015, it was the tumour and where the cancer has spread to:9 fourth most common cause of death and the most • Occult (hidden) stage: cancer cells are detected in common cause of cancer deaths2. There were over fluids but not in any other tests. 11,000 new cases of lung cancer in 2013, with more • Stage 0 tumours are non-invasive cancer that is men (approximately 6,600) than women confined to inner lining of lungs (approximately 4,500) diagnosed3. In 2014, more than • Stage I tumours are small and have not spread to 8000 people in Australia died from lung cancer, nearly lymph nodes or any other organs. 5000 of these deaths were in men3. The survival rates • Stage II tumours are may be large or have spread to from lung cancer are low, with less than half (41.6%) of lymph nodes those diagnosed surviving for one-year, and less than 1 • Stage III tumours may be large, locally advanced, or in 6 surviving for five years3. The survival rates are have spread to lymph nodes but not to distant sites higher in women compared to men, younger people Stage IV: the cancer has spread to either the other compared to older people, non-indigenous compared lung, the space around the lungs or heart, or distant to indigenous, major cities compared to very remote sites. locations, and those in the highest socioeconomic group compared to those in the lowest3. Patient Experience, Expectations and Knowledge (PEEK) Lung cancer has the greatest cancer burden, and it is the second most common reason for radiotherapy for Patient Experience, Expectations and Knowledge both men and women (after prostate and breast (PEEK) is a research program developed by the cancers respectively), and it is the second most International Centre for Community-Driven Research common type of cancer for palliative care (14%) after (CCDR). The aim of PEEK is to conduct patient secondary site3. experience studies across several disease areas using a protocol that will allow for comparisons over time The risk factors for lung cancer include smoking (both quantitative and qualitative components). PEEK tobacco, alcohol consumption, workplace or studies give us a clear picture and historical record of occupational exposure, ionising radiation, air pollution, what it is like to be a patient at a given point in time, passive smoking, family history of lung cancer, lung and by asking patients about their expectations, PEEK disease and medical/pharmaceutical medicines1,4. studies give us a way forward to support patients and Symptoms of lung cancer include persistent cough, their families with treatments, information and care. coughing up blood, chest pain, unexplained weight- loss, loss of appetite, shortness of breath, fatigue, The research protocol used in PEEK studies is ongoing chest infections, some patients will present independently driven by CCDR. PEEK studies include a with symptoms from metastatic disease such as bone quantitative and qualitative component. The pain, jaundice or abdominal pain5,6. quantitative component is based on a series of validated tools. The qualitative component is the There are two main types of lung cancer, small cell lung result of two years of protocol testing by CCDR to cancer (SCLC) and non-small cell lung cancer (NSCLC), develop a structured interview that solicits patient the majority are NSCLC (85%)7. NSCLC can further be experience data and provides patients with the divided into adenocarcinoma, squamous-cell opportunity to provide advice on what they would like carcinoma, and large-cell carcinoma, the most to see in relation to future treatment, information and common from is adenocarcinoma (about 40%)8. care. The structured interview has also been designed so that the outcomes of PEEK studies can inform policy, research, care, information, supportive care services and advocacy efforts.

31 Lung Cancer 2018 Australian PEEK Study Section 1 Methodology Structured Interview (qualitative)

Participants Interviews were conducted via telephone by a registered nurse, allied health professional or To be eligible for the study, participants needed to researcher with a background in psychology, who were have been diagnosed with NSCLC stages I to IV, have trained in qualitative research. The first set of experienced the healthcare system in Australia, be 18 interview questions guided the patient through their years of age or older, be able to speak English, and be whole experience from when symptoms were noticed able to give consent to participate in the study. up to the present day. Recruitment commenced on 1 March 2018 and the study closed for recruitment on 14 October 2018. The next set of questions allowed patients to reflect on Participants were recruited via email and social media what they would like to see in the future in relation to through CCDR and study partners Love and Light treatment and care and asked them what their Support Group, Changing Lung Cancer, Love our Lungs messages to decision-makers would be about the care and Lung Foundation Australia. and treatment patients with their condition receive. The interview also asks patients about the advice they Ethics would give to others recently diagnosed with their condition or disease. All interviews were recorded and Ethics approval for this study was granted (as a low or transcribed verbatim. negligible risk research study) by the Centre for Community-Driven Research Ethics Committee Questionnaire analysis (Reference CS_Q4_03). Statistical analysis was conducted using R included in Data collection the packages “car”, “dplyr” and “ggplot2” (R 3.3.3 GUI 1.69 Mavericks build (7328). The aim of the statistical Data for the online questionnaire was collected using analysis of the SF36, CCCQ, FOP12, and PIH responses Zoho Survey (Zoho Corporation Pvt. Ltd. Pleasanton, was to identify variations by respondent type (by CHF California, USA, www.zoho.com/survey). Participants class, and by location), and by co-morbidity or completed the survey from 1 March 2018 to 10 symptom type (hyperkalemia status, hypertension November 2018. status, sleep problem status and anxiety status). Global scales and sub scales were calculated according There were 5 researchers who conducted telephone to reported instructions10-13.(1,3,4) For comparisons by interviews and used standardised prompts throughout disease stage (Stage I and II, Stage III, and Stage IV) and the interview. The interviews were recorded and comparisons by brain metastases (Brain metastases, transcribed verbatim. Identifying names and locations Other distant metastases, and No distant metastases), were not included in the transcript. All transcripts a one-way analysis of variance (ANOVA) analysis was were checked against the original recording for quality conducted. A Tukey HSD test was used post-hoc to assurance. identify the source of any differences identified in the one-way ANOVA test. Where the assumptions for the Interview data was collected from 1 March 2018 to 10 one-way ANOVA were not met, a Kuskal-Wallis rank November 2018. sum test on care was conducted with post hoc pairwise comparisons using Wilcoxon rank sum test. When the Online questionnaire (quantitative) assumption of equal variances were not met, a Welch one-way test was used with post-hoc pairwise t-tests The online questionnaire consisted of the 36-Item with no assumption of equal variances. Short Form Health Survey (SF36) (RAND Health)10, a modified Cancer Care Coordination Questionnaire for For all other comparisons, a two-sample t-test was Patients (CCCQ) (Young et al 2011)11, the Short Fear of used when assumptions for normality and variance Progression Questionnaire (FOP12) (Hinz et al)12, and were met, or when assumptions were not met, a the Partners in Health version 2 (PIH) (Petov 2010)13. In Wilcoxon rank sum test with continuity correction was addition investigator derived questions about used. demographics, diagnosis, treatment received and future treatment decisions making were included.

32 Lung Cancer 2018 Australian PEEK Study Section 1 Questions where participants were asked to rank 480 participants18, evaluating a specialist pharmacist preferences were analysed using weighted averages. for lung cancer patients. Nine quantitative studies Weights were applied in reverse, the most preferred were clinical trials19-27, seven studies of complementary option was given the largest weight equal to the therapies28-34, two studies focused on quality of life35,36, number of options, the least preferred option was two studies explored health literacy37,38 and one in given the lowest weight of 1. addition to health literacy included treatment adherence38, and one study each on the following Structured interviews analysis topics; symptoms39, treatment decision making40, psychosocial aspects41, supportive care42, and A content analysis was conducted using conventional surgery43. analysis to identify major themes from structured interviews. Text from the interviews were read line- The 31 studies identified in Table 1.1 include between by-line by the lead researcher and then imported into one and five topics from the time of diagnosis to NVivo 8 (QSR International). Each question within the advance care planning. In this PEEK study, 80 people interview was individually analysed. Initial categories with NSCLC throughout Australia participated in the and definitions were identified and registered in NVivo. study that included a structured interview and The minimum coded unit was a sentence however quantitative questionnaire. This study in NSCLC is there were also paragraphs and phrases that were therefore the largest mixed methodology study in coded as a unit. Australia in the past five years. In addition, PEEK is a comprehensive study covering all aspects of disease A second researcher verified the codes and definitions, experience from symptoms, diagnosis, treatment, and the text was coded until full agreement was healthcare communication, information provision, reached using the process of consensual validation. care and support, quality of life, and future treatment Where a theme occurred less than 5 times it was not and care expectations. included in the study results.

Data analysis and final reporting was completed on 25 January 2019.

Position of this study

A search was conducted in Pubmed to identify NSCLC quality of life or patient experience studies that had been conducted in the past five years in Australia (Table 1.1).

Thirty-one studies were identified that included participants from Australia with NSCLC. One study used mixed methods to explore phycological wellbeing in 14 participants14. Four qualitative studies of 10 to 19 participants, covering advance care planning15, diagnosis16, genetic screening17, and supportive care18. Twenty-six studies were identified that included quantitative collection of patient reported outcomes, these ranged in size from 10 to 976 participants, some of these studies included worldwide participation, the largest conducted exclusively in an Australia included

33 Lung Cancer 2018 Australian PEEK Study Section 1

Table 1.1: Comparative studies Studyfocus Diagnosis/screening QOL Function Depression and Anxiety Symptoms status Health adherence Treatment Literacy Health making Decision therapies Complementary Support aspects Psychosocial Treatmentsatisfaction Description Number Studytype

Chambers et al, 201414 14 Mixed Psychological wellbeing ü ü ü methods Michael et al, 201315 18* Qualitative Advance care planning ü Rankin et al, 201616 19 Qualitative Diagnosis ü Liang et al, 201617 16 Qualitative Genetic screening ü Brown et al, 201518 10 Qualitative Supportive care ü Hughes et al, 201719 27 Quantitative Clinical Trial ü Brahmer et al, 201720 299# Quantitative Clinical trial ü ü Chabot et al, 201721 306# Quantitative Clinical trial ü ü Solomon et al, 201422 340# Quantitative Clinical trial ü ü ü Sequist et al, 201323 345# Quantitative Clinical trial ü ü Ellis et al, 201424 480# Quantitative Clinical trial ü ü Mulvenna et al, 201625 538# Quantitative Clinical trial ü ü Blackhall et al, 201726 976# Quantitative Clinical trial ü ü ü Currow et al, 201744 513# Quantitative Clinical trials ü ü Peddle-McIntyre et al, 12 Quantitative Complementary therapies ü 201728 Granger et al, 201330 15 Quantitative Complementary therapies ü ü ü Cavalheri et al, 201731 17 Quantitative Complementary therapies ü ü ü ü Chan et al, 201432 20 Quantitative Complementary therapies ü ü Granger et al, 201429 50 Quantitative Complementary therapies ü ü ü Dhillon et al, 201733 112 Quantitative Complementary therapies ü ü Ni et al, 201734 161# Quantitative Complementary therapies ü ü Chan et al, 201639 44 Quantitative Symptoms ü ü ü ü Koay et al, 201337 93 Quantitative Health literacy ü ü Cavalheri et al, 201535 23 Quantitative HRQOL ü ü ü Chouaid et al, 201336 263# Quantitative HRQOL ü ü Walter et al, 201645 480 Quantitative Specialist pharmacist ü ü Chambers et al, 201541 151 Quantitative Psychosocial ü ü Schofield et al, 201342 108 Quantitative Supportive care ü ü ü ü ü Granger et al, 201643 69 Quantitative Surgery ü ü ü ü Yoong et al, 201338 50 Quantitative Treatment adherence and ü ü health literacy Moth et al, 201640 98 Quantitative Treatment decision ü making * Includes non lung cancer participants # International study 34 Lung Cancer 2018 Australian PEEK Study Section 1

Abbreviations CCDR Centre for Community-Driven Research DF DF Degrees of Freedom. The number of values in the final calculation of a statistic that are free to vary. IQR Interquartile range. A measure of statistical dispersion, being equal to the difference between 75th and 25th percentiles, or between upper and lower quartiles. F F-statistic. An F statistic is a value you get when you run an ANOVA test or a regression analysis to find out if the means between two populations are significantly different. FOP Fear of Progression. Tool to measure anxiety related to progression. MS Mean of Squares. Estimates of variance across groups SD . . SD Standard Deviation. Standard deviation A quantity expressing by how much the members of a group differ from the mean value for the group. SF 36 Short Form Health Survey 36 SS or c2 Sum of the Squares. The sum of squares is used as a mathematical way to find the function which best fits (varies least) from the data. t t-Statistic. Size of the difference relative to the variation in your sample data. PEEK Patient Experience, Expectations and Knowledge PIH Partners in Health P Probability value. A small p-value (typically ≤ 0.05) indicates strong. A large p-value (> 0.05) indicates weak evidence. QoL QoL Quality of LIfe W The W statistic The test value from the Wilcoxon Rank sum test. The theoretical range of W is between 0 and (number in group one) x (number in group 2). When W=0, the two groups are exactly the same.

35 Lung Cancer 2018 Australian PEEK Study Section 1 References 15. Michael N, O'Callaghan C, Clayton J, et al. 1. Australian Institute of Health and Welfare & Understanding how cancer patients actualise, Cancer Australia 2011. Lung cancer in Australia: an relinquish, and reject advance care planning: overview. Cancer series no. 64. Cat. no. CAN 58. implications for practice. Support Care Cancer 2013; Canberra: AIHW. 21(8): 2195-205. 2. Australian Bureau of Statistics 2016, Causes of 16. Rankin NM, York S, Stone E, et al. Pathways to Death, Australia, 2015. 'Table 1: Underlying causes of Lung Cancer Diagnosis: A Qualitative Study of Patients death (Australia), data cube: Excel spreadsheet, cat. and General Practitioners about Diagnostic and no. 3303.0, viewed 19 March 2018, Pretreatment Intervals. Ann Am Thorac Soc 2017; http://www.abs.gov.au/AUSSTATS/[email protected]/Lookup/ 14(5): 742-53. 3303.0Main+Features100012015?OpenDocument. 17. Liang R, Meiser B, Smith S, et al. Advanced 3. Australian Institute of Health and Welfare cancer patients' attitudes towards, and experiences 2017. Cancer in Australia 2017. Cancer series no.101. with, screening for somatic mutations in tumours: a Cat. no. CAN 100. Canberra: AIHW. qualitative study. Eur J Cancer Care (Engl) 2017; 26(6). 4. IARC 2014. World cancer report 2014. Lyon, 18. Brown NM, Lui CW, Robinson PC, Boyle FM. France: IARC. Supportive care needs and preferences of lung cancer 5. Travis W.D. BE, Muller-Hermelink H.K., Harris patients: a semi-structured qualitative interview study. C.C. (Eds.). World Health Organization Classification of Support Care Cancer 2015; 23(6): 1533-9. Tumours. Pathology and Genetics of Tumours of the 19. Hughes BG, Ahern E, Lehman M, et al. Lung, Pleura, Thymus and Heart. IARC Press: Lyon Concurrent chemoradiation with cisplatin and 2004. 2004. vinorelbine followed by consolidation with oral 6. National Cancer Expert Reference Group. vinorelbine in locally advanced non-small cell lung Optimal care pathway for people with lung cancer. cancer (NSCLC): the phase II CONCAVE study. Asia Pac 2015. J Clin Oncol 2017; 13(3): 137-44. 7. Zappa C, Mousa SA. Non-small cell lung cancer: 20. Brahmer JR, Rodriguez-Abreu D, Robinson AG, current treatment and future advances. Transl Lung et al. Health-related quality-of-life results for Cancer Res 2016; 5(3): 288-300. pembrolizumab versus chemotherapy in advanced, PD- 8. Sher T, Dy GK, Adjei AA. Small cell lung cancer. L1-positive NSCLC (KEYNOTE-024): a multicentre, Mayo Clin Proc 2008; 83(3): 355-67. international, randomised, open-label phase 3 trial. 9. American Joint Committee on Cancer (2010). Lancet Oncol 2017; 18(12): 1600-9. AJCC Cancer Staging Manual Seventh Edition. Chiago. 21. Chabot P, Hsia TC, Ryu JS, et al. Veliparib in 10. 36-Item Short Form Survey (SF-36) Scoring combination with whole-brain radiation therapy for Instructions. n.d. patients with brain metastases from non-small cell lung https://www.rand.org/health/surveys_tools/mos/36- cancer: results of a randomized, global, placebo- item-short-form/scoring.html (accessed 10 February controlled study. J Neurooncol 2017; 131(1): 105-15. 2017. 22. Solomon BJ, Mok T, Kim DW, et al. First-line 11. Young JM, Walsh J, Butow PN, Solomon MJ, crizotinib versus chemotherapy in ALK-positive lung Shaw J. Measuring cancer care coordination: cancer. N Engl J Med 2014; 371(23): 2167-77. development and validation of a questionnaire for 23. Sequist LV, Yang JC, Yamamoto N, et al. Phase patients. BMC Cancer 2011; 11: 298. III study of afatinib or cisplatin plus pemetrexed in 12. Hinz A, Mehnert A, Ernst J, Herschbach P, patients with metastatic lung adenocarcinoma with Schulte T. Fear of progression in patients 6 months EGFR mutations. J Clin Oncol 2013; 31(27): 3327-34. after cancer rehabilitation-a- validation study of the 24. Ellis PM, Shepherd FA, Millward M, et al. fear of progression questionnaire FoP-Q-12. Support Dacomitinib compared with placebo in pretreated Care Cancer 2015; 23(6): 1579-87. patients with advanced or metastatic non-small-cell 13. Petkov J, Harvey P, Battersby M. The internal lung cancer (NCIC CTG BR.26): a double-blind, consistency and construct validity of the partners in randomised, phase 3 trial. Lancet Oncol 2014; 15(12): health scale: validation of a patient rated chronic 1379-88. condition self-management measure. Qual Life Res 25. Mulvenna P, Nankivell M, Barton R, et al. 2010; 19(7): 1079-85. Dexamethasone and supportive care with or without 14. Chambers SK, Morris BA, Clutton S, et al. whole brain radiotherapy in treating patients with non- Psychological wellness and health-related stigma: a small cell lung cancer with brain metastases unsuitable pilot study of an acceptance-focused cognitive for resection or stereotactic radiotherapy (QUARTZ): behavioural intervention for people with lung cancer. results from a phase 3, non-inferiority, randomised Eur J Cancer Care (Engl) 2015; 24(1): 60-70. trial. Lancet 2016; 388(10055): 2004-14. 36 Lung Cancer 2018 Australian PEEK Study Section 1 26. Blackhall F, Ross Camidge D, Shaw AT, et al. 38. Yoong J, Traeger LN, Gallagher ER, Pirl WF, Final results of the large-scale multinational trial Greer JA, Temel JS. A pilot study to investigate PROFILE 1005: efficacy and safety of crizotinib in adherence to long-acting opioids among patients with previously treated patients with advanced/metastatic advanced lung cancer. J Palliat Med 2013; 16(4): 391- ALK-positive non-small-cell lung cancer. ESMO Open 6. 2017; 2(3): e000219. 39. Chan R, Yates P, McCarthy AL. Fatigue Self- 27. Currow DC, Burns CM, Abernethy AP. Place of Management Behaviors in Patients With Advanced death for people with noncancer and cancer illness in Cancer: A Prospective Longitudinal Survey. Oncol Nurs South Australia: a population-based survey. J Palliat Forum 2016; 43(6): 762-71. Care 2008; 24(3): 144-50. 40. Moth E, McLachlan SA, Veillard AS, et al. 28. Peddle-McIntyre CJ, Baker MK, Lee YCG, et al. Patients' preferred and perceived roles in making The feasibility of a pragmatic distance-based decisions about adjuvant chemotherapy for non-small- intervention to increase physical activity in lung cancer cell lung cancer. Lung Cancer 2016; 95: 8-14. survivors. Eur J Cancer Care (Engl) 2018; 27(1). 41. Chambers SK, Baade P, Youl P, et al. 29. Granger CL, McDonald CF, Irving L, et al. Low Psychological distress and quality of life in lung cancer: physical activity levels and functional decline in the role of health-related stigma, illness appraisals and individuals with lung cancer. Lung Cancer 2014; 83(2): social constraints. Psychooncology 2015; 24(11): 1569- 292-9. 77. 30. Granger CL, Chao C, McDonald CF, Berney S, 42. Schofield P, Ugalde A, Gough K, et al. A Denehy L. Safety and feasibility of an exercise tailored, supportive care intervention using systematic intervention for patients following lung resection: a assessment designed for people with inoperable lung pilot randomized controlled trial. Integr Cancer Ther cancer: a randomised controlled trial. Psychooncology 2013; 12(3): 213-24. 2013; 22(11): 2445-53. 31. Cavalheri V, Jenkins S, Cecins N, et al. Exercise 43. Granger CL, Parry SM, Edbrooke L, Denehy L. training for people following curative intent treatment Deterioration in physical activity and function differs for non-small cell lung cancer: a randomized controlled according to treatment type in non-small cell lung trial. Braz J Phys Ther 2017; 21(1): 58-68. cancer - future directions for physiotherapy 32. Chan RJ, Mann J, Tripcony L, et al. Natural oil- management. Physiotherapy 2016; 102(3): 256-63. based emulsion containing allantoin versus aqueous 44. Currow D, Temel JS, Abernethy A, Milanowski cream for managing radiation-induced skin reactions in J, Friend J, Fearon KC. ROMANA 3: a phase 3 safety patients with cancer: a phase 3, double-blind, extension study of anamorelin in advanced non-small- randomized, controlled trial. Int J Radiat Oncol Biol cell lung cancer (NSCLC) patients with cachexia. Ann Phys 2014; 90(4): 756-64. Oncol 2017; 28(8): 1949-56. 33. Dhillon HM, Bell ML, van der Ploeg HP, et al. 45. Walter C, Mellor JD, Rice C, et al. Impact of a Impact of physical activity on fatigue and quality of life specialist clinical cancer pharmacist at a in people with advanced lung cancer: a randomized multidisciplinary lung cancer clinic. Asia Pac J Clin Oncol controlled trial. Ann Oncol 2017; 28(8): 1889-97. 2016; 12(3): e367-74. 34. Ni J, Denehy L, Feng J, Xu L, Wu Y, Granger CL. Physical Activity Behavior After a Diagnosis of Lung Cancer Differs Between Countries. Integr Cancer Ther 2017: 1534735417699513. 35. Cavalheri V, Jenkins S, Cecins N, et al. Impairments after curative intent treatment for non- small cell lung cancer: a comparison with age and gender-matched healthy controls. Respir Med 2015; 109(10): 1332-9. 36. Chouaid C, Agulnik J, Goker E, et al. Health- related quality of life and utility in patients with advanced non-small-cell lung cancer: a prospective cross-sectional patient survey in a real-world setting. J Thorac Oncol 2013; 8(8): 997-1003. 37. Koay K, Schofield P, Gough K, et al. Suboptimal health literacy in patients with lung cancer or head and neck cancer. Support Care Cancer 2013; 21(8): 2237-45.

37 Lung Cancer 2018 Australian PEEK Study Section 2 Section 2 Demographics

Lung Cancer 2018 Australian PEEK Study Section 2

Section 2: Demographics and study population characteristics Demographics • Eighty participants with non-small cell lung cancer from Australia were recruited into the study. • Seven (8.75%) had stage I, 10 (12.50%) stage II, 17 (21.25%) stage III, and 46 (57.50%) stage IV. • Of those whose cancer had spread (N=63, 78.75%), the most common site was lymph nodes (N=41, 65.08%) followed by bone (N=25, 39.68%) and brain (N=22, 34.95%). • The majority of participants were from Victoria (N=24, 30.00%), Queensland (N=24, 30.00%), and NSW (N=19, 23.75%), and most live in major cities (N=65, 81.25%). • Sixty-six females (82.50%) and 14 males (17.50%) participated. Baseline Heath – SF36 score The Short Form Health Survey 36 (SF36) measures baseline health, or the general health of an individual. A higher score indicates better baseline health. • The overall scores for the cohort for “SF36 Physical functioning”, “SF 36 Role functioning/emotional”, “ SF36 Emotional well-being”, “ SF36 Social functioning”, and “SF36 Pain” were all in the were in the second highest quintile indicating good scores. • The overall scores for the cohort for “SF36 Role functioning/physical”, “SF36 Energy/fatigue”, “SF36 General health”, and “SF36 Health change” were in the middle quintile indicating moderate scores. SF36 scores by stage • The lung cancer stage of disease was described as those with early or stages I or II disease (N=17, 21.25%), those with invasive or stage III disease (N=17.00, 21.25%), and those with advanced or stage IV disease (N=46, 57.50%). • Participants with stage IV lung cancer had median scores for the “SF36 Physical function” scale that were in the second highest quintile, indicating good physical function. The median score was significantly higher than those with Stage I and II lung cancer, where the median score was in the middle of the scale indicating moderate physical function. • Participants with stage IV lung cancer had mean scores for the “SF36 General health” scale that were in the middle of the scale indicating moderate general health. The mean score was significantly higher than those with stage I and II, and stage III lung cancer which were both in the second lowest quintiles indicating poor general health. SF36 scores by distant metastases • Distant metastases was described as those that had disease with distant metastases (excluding those with spread to lymph nodes only) (N=46, 57.50%) compared to those no distant metastases (N=34, 42.50%). • Those with distant metastases had a median score for the “SF36 Physical functioning” scale that was in the second highest quintile, indicating good physical functioning. The median score was significantly higher than those with no distant metastases, that were in the middle of the scale, indicating moderate physical functioning. • Those with distant metastases had a median score for the “SF36 Role functioning/physical” scale that was in the second highest quintile, indicating good role functioning due to physical health. The median score was significantly higher than those with no distant metastases, that were in the lowest quintile, indicating very poor role functioning due to physical health. • Those with distant metastases had a median score for the “SF36 Emotional well-being” scale that was in the second highest quintile, indicating good emotional well-being. The median score was significantly higher than those with no distant metastases, that were in the middle of the scale, indicating moderate emotional well- being. • Those with distant metastases had a median score for the “SF36 General health” scale that was in the middle of the scale, indicating moderate general health. The median score was significantly higher than those with no distant metastases, that was in the second lowest quintile, indicating poor general health. • Those with distant metastases had a median score for the “SF36 Health change” scale that was in the middle of the scale, indicating moderate scores. The median score was significantly higher than those with no distant metastases, that were in the second lowest quintile, indicating poor scores. SF36 scores by Brain metastases • Brain metastases was described as those with brain metastases (N=22, 27.50%) were compared to those with other distant metastases (excluding those with spread to lymph nodes only) (N=24, 30.00 %), and those with no distant metastases (N=34, 42.50%).

39 Lung Cancer 2018 Australian PEEK Study Section 2 • Those with brain metastases and those with other distant metastases had median scores for the “SF36 Physical functioning” scale that were in the second highest quintile, indicating good physical functioning. These median scores were significantly higher than the median score for those with no distant metastases, which was in the middle of the scale indicating moderate physical functioning. • Those with brain metastases and those with other distant metastases had median scores that were significantly higher than those with no distant metastases for the “SF36 Emotional well-being” scale. The median scores for brain metastases, and other distant metastases, were in the second highest quintile, indicating good scores. The median score for no distant metastases was in the middle of the scale indicating a moderate score. • Those with brain metastases and those with other distant metastases had median scores for the “SF36 General health” scale that were in the middle of the scale, indicating moderate general health. These median scores were significantly higher than the median score for those with no distant metastases, which was in the second lowest quintile indicating poor general health. SF36 scores by Energy/fatigue • Energy/fatigue was described as those with a higher than average score for the cohort in the “SF36 energy/fatigue” scale, better energy/fatigue (N=42, 52.50%) compared to those with an average or less score, worse energy/fatigue (N=38, 47.50%) • The “SF36 Emotional well-being” mean score for participants with better energy/fatigue was in the second highest quintile indicating good emotional well-being. The mean score was significantly higher than the mean score for participants with worse energy/fatigue which was in the middle of the scale indicating moderate emotional well-being. • The “SF36 physical functioning”, “SF36 Social functioning”, and “SF36 Pain” median scores for participants with better energy/fatigue were in the second highest quintile indicating good physical functioning, social functioning and less pain. These scores were significantly higher than the median scores for participants with worse energy fatigue which were in the middle of the scale, indicating moderate physical functioning, social functioning and moderate pain. • The “SF36 Role functioning/physical” median score for participants with better energy/fatigue was in the second highest quintile indicating good role functioning due to physical health. These scores were significantly higher than the median score for participants with worse energy/fatigue which was in the lowest quintile indicating very poor role functioning due to physical health. • The “SF36 Role functioning/emotional” median score for participants with better energy/fatigue was in the highest quintile indicating very good role functioning due to emotional problems. This was significantly higher compared to and the median score for participants with worse energy/fatigue which was in the second lowest quintile indicating poor role functioning due to emotional problems. • The “SF36 General health”, and “SF36 Health change”, median scores for participants with better energy/fatigue were in the middle of the scale, indicating moderate general health, and moderate health change. These scores were significantly higher compared to and the median score for participants with worse energy/fatigue which was in the second lowest quintile indicating poor general health, and poor health change. SF36 scores by Pain • Pain was described as those that scored above average for the cohort in the SF36 Pain scale, less pain (N=48, 60.00%) compared to those that scored average or below, more pain (N=32, 40.00%). • The “SF36 Energy/fatigue” mean score for participants with less pain was in the in the middle of the scale indicating moderate energy/fatigue. These scores were significantly higher compared to the mean score for participants with more pain was in the second lowest quintile indicating poor energy/fatigue. • The “SF36 physical functioning”, and “SF36 Social functioning”, median scores for participants with less pain were in the second highest quintile indicating good scores. These scores were significantly higher compared to participants with more pain with median scores in the middle of the scale, indicating moderate scores. • The “SF36 Role functioning/physical” median score for participants with less pain was in the second highest quintile indicating good role functioning due to physical health. These scores were significantly higher compared to and the median score for participants with more pain which was in the lowest quintile indicating very poor role functioning due to physical health. • The “SF36 Role functioning/emotional” median score for participants with less pain was in the highest quintile indicating very good role functioning due to emotional problems. These scores were significantly higher compared to and the median score for participants with more pain which was in the lowest quintile indicating very poor role functioning due to emotional problems. • The “SF36 General health”, and “SF36 Health change”, median scores for participants with less pain were in the middle of the scale, indicating moderate general health, and moderate health change. These scores were 40 Lung Cancer 2018 Australian PEEK Study Section 2 significantly higher compared to and the median score for participants with more pain which was in the second lowest quintile indicating poor general health, and poor health change. SF36 scores by gender • The gender of participants, females (N=66, 82.50%) were compared with males (N=14, 17.50%). • No significant differences were observed between males and females for any of the SF36 scales SF36 scores by age • The age of the participants, those that were 55 and older, older (55 and older) (N=36, 45.00%) were compared with those that were aged between 18 and 54, younger (18 to 54) (N=44, 55.00%). • No significant differences were observed between older and young participants for any of the SF36 scales SF36 scores by location • The location of participants was evaluated by postcode using the Australian Statistical Geography Maps (ASGS) Remoteness areas, those living in a metropolitan area, metropolitan (N=65, 81.25%) were compared to those living in regional/rural areas, regional or remote (N=15, 18.75%). • No significant differences were observed between those that live in metropolitan areas and those that live in regional or remote areas for any of the SF36 scales SF36 scores by education • Education status, between those with a university degree, university (N= 40, 50.00%), and those with trade or high school qualifications, trade or high school (N=40, 50.00%) • The “SF36 physical functioning”, median score for participants with university qualifications were in the second highest quintile indicating good physical functioning. These scores were significantly higher compared to participants with trade or high school qualifications with median scores in the middle of the scale, indicating moderate physical functioning. SF36 scores by Socio-Economic Indexes For Areas (SEIFA) • Socio-economic Indexes for Areas (SEIFA) scores range from 1 to 10, a higher score denotes a higher level of advantage. Those with a higher SEIFA score of 7-10 , high SEIFA (N=50, 62.50%) compared to those with a mid to low SEIFA score of 1-6, mid-low SEIFA (N=30, 37.50%). • The “SF36 Energy/fatigue” mean score for participants that lived in an area with a high SEIFA was in the in the middle of the scale indicating moderate energy/fatigue. These scores were significantly higher compared to the mean score for participants that lived in an area with a low SEIFA was in the second lowest quintile indicating poor energy/fatigue. • The “SF36 physical functioning” median score for participants that lived in an area with a high SEIFA was in the second highest quintile indicating good physical functioning. These scores were significantly higher compared to participants that lived in an area with a low SEIFA with a median score in the second lowest quintile, indicating poor physical functioning. • The “SF36 Role functioning/physical” median score for participants that lived in an area with a high SEIFA was in the in the middle of the scale, indicating moderate role functioning due to physical health. These scores were significantly higher compared to and the median score for participants that lived in an area with a low SEIFA which was in the lowest quintile indicating very poor role functioning due to physical health. • The “SF36 Social functioning”, and “SF36 Pain”, median scores for participants that lived in an area with a high SEIFA were in the second highest quintile indicating good social functioning, and less pain. These scores were significantly higher compared to participants that lived in an area with a low SEIFA with median scores in the middle of the scale, indicating moderate social functioning, and moderate pain. • The “SF36 General health” median score for participants that lived in an area with a high SEIFA was in the middle of the scale, indicating moderate general health. These scores were significantly higher compared to the median score for participants that lived in an area with a low SEIFA which was in the second lowest quintile indicating poor general health.

41 Lung Cancer 2018 Australian PEEK Study Section 2 Demographics Queensland (N=24, 30.00%), and NSW (N=19, 23.75%), and most live in major cities (N=65, 81.25%). Eighty participants with lung cancer from Australia Sixty-six females (82.50%) and 14 males (17.50%) were recruited into the study. The majority of participated. Demographics of participants are listed participants were from Victoria (N=24, 30.00%), in Table 2.1

Table 2.1: Demographics Characteristic Count (N=80) Percentage of Participants

Age 35-44 19 23.75 45-54 25 31.25 55-64 26 32.50 65-74 8 10.00 75+ 2 2.50 Gender Female 66 82.50 Male 14 17.50 State VIC 24 30.00 QLD 24 30.00 NSW 19 23.75 WA 7 8.75 SA 6 7.50 Location Major city 65 81.25 Inner regional 10 12.50 Outer regional 5 6.25 SEIFA 1 4 5.00 2 5 6.25 3 3 3.75 4 3 3.75 5 6 7.50 6 9 11.25 7 3 3.75 8 10 12.50 9 19 23.75 10 18 22.50 Ethnicity Caucasian/White 72 90.00 Asian 6 7.50 Hispanic/Latino 1 1.25 Latino 1 1.25

Lung Cancer 2018 Australian PEEK Study 42 Section 2

Table 2.1 Demographics continued

Characteristic Count (N=80) Percentage of Participants

Education Less than high school degree 8 10.00 High school degree or equivalent 20 25.00 Trade 3 3.75 Some college but no degree 9 11.25 Associate degree 5 6.25 Bachelor degree 26 32.50 Graduate degree 9 11.25 Employment Employed, working part time 24 30.00 Retired 23 28.75 Employed, working full time 17 21.25 Currently receiving Centrelink support 5 6.25 Disabled, not able to work 5 6.25 Currently receiving Centrelink support; Disabled, not able to work 2 2.50 Full/part time carer 1 1.25 Not employed, looking for work 1 1.25 Not employed, looking for work; Currently receiving Centrelink support; Disabled, not able to work 1 1.25 Not employed, looking for work; Full/part time study 1 1.25 Full or part time carer I am not a carer 47 58.75 Children 28 35.00 Spouse 2 2.50 Grandchildren, Parents 1 1.25 Parents 1 1.25 Siblings 1 1.25 Accessed "My Health Record" Yes 12 15.00 No 30 37.50 Not sure 12 15.00 I don't know what "My Health Record" is 26 32.50 How useful was "My Health Record" in helping manage condition N=12 Good 1 8.33 Acceptable 4 33.33 Very Poor 7 58.33

Lung Cancer 2018 Australian PEEK Study 43 Section 2 Disease description most common site was lymph nodes (N=41, 65.08%) followed by bone (N=25, 39.68%) and brain (N=22, All eighty participants were diagnosed with non-small 34.92%). Forty-two participants named specific cell lung cancer, disease characteristics are listed in biomarkers they had relevant to their condition Table 2.2. Seven (8.75%) had stage I, 10 (12.50%) stage (52.50%). II, 17 (21.25%) stage III, and 46 (57.50%) stage IV. Of those whose cancer had spread (N=63, 78.75%), the Table 2.2: Lung cancer description

Disease description Count (N=80) Percent

Current stage Stage 1 7 8.75 Stage 2 10 12.50 Stage 3 17 21.25 Stage 4 46 57.50 Cancer spread No 17 21.25 Yes 63 78.75 Spread (N=63, can have more than one site of disease spread) Lymph nodes 41 65.08 Bone 25 39.68 Brain 22 34.92 Adrenal glands 8 12.70 Liver 8 12.70 Pleural lining 5 7.94 Adrenal glands 3 4.76 Diaphragm 2 3.17 Pleural nodules 2 3.17 Bones 1 1.59 Kidney 1 1.59 Oesophageal 1 1.59 Other lung 1 1.59 Uterus and cervix 1 1.59 Biomarkers ALK 22 27.50 EGFR 17 21.25 ROS1 3 3.75 Not sure 38 47.50

Subgroup analysis those with advanced or stage IV disease (N=46,

Subgroup analysis are included throughout the study 57.50%). Distant metastases was described as those and the subgroups are listed in Table 2.3. The lung that had disease with distant metastases (excluding cancer stage of disease was described as those with those with spread to lymph nodes only) (N=46, 57.50%) early or stages I or II disease (N=17, 21.25%), those with compared to those no distant metastases (N=34, invasive or stage III disease (N=17.00, 21.25%), and 42.50%). Brain metastases was described as those

Lung Cancer 2018 Australian PEEK Study 44 Section 2 with brain metastases (N=22, 27.50%) were compared (55 and older) (N=36, 45.00%) were compared with to those with other distant metastases (excluding those that were aged between 18 and 54, younger (18 those with spread to lymph nodes only) (N=24, 30.00 to 54) (N=44, 55.00%). The location of participants was %), and those with no distant metastases (N=34, evaluated by postcode using the Australian Statistical 42.50%). The Short Form Health Survey 36 (SF36) Geography Maps (ASGS) Remoteness areas accessed measures baseline health, or the general health of an from DoctorConnect (doctorconnect.gov.au), those individual. Two of the nine scales have been used in living in a metropolitan area, metropolitan (N=65, the subgroup analysis, energy/fatigue, for those with a 81.25%) were compared to those living in higher than average score for the cohort in the SF36 regional/rural areas, regional or remote (N=15, energy/fatigue scale, better energy/fatigue (N=42, 18.75%). Comparisons were made by education 52.50%) compared to those with an average or less status, between those with a university degree, score, worse energy/fatigue (N=38, 47.50%); pain, university (N= 40, 50.00%), and those with trade or high those that scored above average for the cohort in the school qualifications, trade or high school (N=40, SF36 Pain scale, less pain (N=48, 60.00%) compared to 50.00%); and by Socio-economic Indexes for Areas those that scored average or below, more pain (N=32, (SEIFA) (www.abs.gov.au), SEIFA scores range from 1 40.00%). to 10, a higher score denotes a higher level of advantage. Those with a higher SEIFA score of 7-10 , The gender of participants, females (N=66, 82.50%) high SEIFA (N=50, 62.50%) compared to those with a were compared with males (N=14, 17.50%). The age of mid to low SEIFA score of 1-6, mid-low SEIFA (N=30, the participants, those that were 55 and older, older 37.50%).

Table 2.3: Subgroups

Subgroup N=80 Percent

Stages I and II 17 21.25 Lung cancer stage Stage III 17 21.25 Stage IV 46 57.50 No distant metastases 34 42.50 Distant metastases Distant metastases 46 57.50 Brain metastases 22 27.50 Brain metastases Other distant metastases 24 30.00 No distant metastases 34 42.50 Better energy/fatigue 42 52.50 Fatigue Worse energy/fatigue 38 47.50 Less pain 48 60.00 Pain More pain 32 40.00 Female 66 82.50 Gender Male 14 17.50 Older (55 and older) 36 45.00 Age Younger (18 to 54) 44 55.00 Metropolitan 65 81.25 Location Regional or remote 15 18.75 Trade or high school 40 50.00 Education University 40 50.00 High SEIFA 50 62.50 SEIFA Mid - low SEIFA 30 37.50

Lung Cancer 2018 Australian PEEK Study 45 Section 2 Symptoms is/was average”. The average quality of life score is displayed in Table 2.4. The worst quality of life was Participants recorded symptoms they experienced experienced with recurring bronchitis or pneumonia before diagnosis. The most common symptoms were (average = 2.81) in the life was distressing to life was a back and/or shoulder pain (N=35, 43.75%), tired/lower little distressing range. Back and shoulder pain had an energy levels than usual (N=31, 38.75%), and shortness average quality of life of 4.14 in the life was average to of breath (N=29, 36.25%). Participants were asked to life was good range, tired/lower energy levels than describe the quality of life experienced from co- usual (average = 3.94) and shortness of breath (3.89) morbidities on a scale of one to seven, where one were in the Life was a little distressing to life is average represents that “life is/was very distressing”, seven range. represents “life is/was great” and four represents “life

Table 2.4: Symptoms experienced Quality of life Symptom Number Percent Range Mean Shoulder or back pain 35 43.75 1 to 7 4.14 Tired/lower energy levels than usual 31 38.75 1 to 7 3.94 Shortness of breath and wheezing 29 36.25 1 to 7 4.38 Coughing or spitting up blood? 28 35.00 1 to 6 3.43 New cough that does not go away 25 31.25 1 to 6 3.84 Recurring bronchitis or pneumonia 16 20.00 1 to 5 2.81 Chest pain 12 15.00 1 to 7 4.08 Hoarseness (scratchy voice) 12 15.00 1 to 5 3.33 Unexplained weight loss 8 10.00 1 to 7 4.50 Loss of appetite 7 8.75 2 to 7 3.86

5.00 4.50 4.00 3.50 3.00 2.50 2.00 1.50

Mean quality of life quality Mean 1.00 0.50 0.00

Tir ed

Chest painHoarsenessWeight loss Lost appetite

Shoulder/back pain Shortness of breath New persistentBronchitis/pneumonia cough Coughing/spitting blood Figure 1.1: Symptoms experienced and quality of life

Lung Cancer 2018 Australian PEEK Study 46 Section 2 Baseline health (median = 62.50, IQR = 50.00), and Pain (median = 67.50, IQR = 45.00), indicating good scores. The overall The Short Form Health Survey 36 (SF36) measures score for the cohort were in the middle quintile for baseline health, or the general health of an individual. Role functioning/physical (median = 50.00, IQR = The SF36 comprises nine scales: physical functioning, 100.00), Energy/fatigue (mean = 43.31, SD = 20.33), role functioning/physical, role functioning/emotional, General health (median = 45.00, IQR = 36.25), and energy and fatigue, emotional well-being, social Health change (median = 50.00, IQR - 50.00), indicating function, pain, general health, and health change from moderate scores. one year ago. A higher score denotes better health or function. Comparisons of SF36 have been made based on Lung cancer stage (Figures 2.2 to 2.10, Tables 2.6 to Summary statistics for the entire cohort are displayed 2.10), Distant metastases (Figures 2.11 to 2.19, Table alongside the possible range of each scale in Table 2.5, 2.11), Brain metastases (Figures 2.20 to 2.28, Tables where the scale has a normal distribution mean and SD 2.12 to 2.15), Energy/Fatigue, (Figures 2.29 to 2.36, are used as a central measure, otherwise the median Tables 2.16 to 2.17), Pain (Figures 2.37 to 2.44, Tables and IQR are used. 2.18 to 2.19), Gender (Figures 2.45 to 2.53, Tables 2.20 to 2.21), Age (Figures 2.54 to 2.62, Tables 2.22 to 2.23), The overall scores for the cohort were in the second Location (Figures 2.63 to 2.71, Tables 2.24 to 2.25), highest quintile for Physical functioning (median = Education (Figures 2.72 to 2.80, Tables 2.26 to 2.27), 65.00, IQR = 47.50), Role functioning/emotional and SEIFA (Figures 2.81 to 2.89, Tables 2.28 to 2.29). (median = 66.67, IQR = 100.00), Emotional well-being (median = 62.00, IQR = 24.00), Social functioning

Table 2.5: SF36 summary statistics all participants Possible SF36 scale Mean SD Median IQR range Quintile Physical functioning 60.63 29.58 65.00 47.50 1 to 100 4 Role functioning/physical 46.88 43.28 50.00 100.00 1 to 100 3 Role functioning/emotional 55.83 44.30 66.67 100.00 1 to 100 4 Energy/Fatigue* 43.31 20.33 45.00 26.25 1 to 100 3 Emotional well-being 65.05 17.90 62.00 24.00 1 to 100 4 Social functioning 61.09 28.89 62.50 50.00 1 to 100 4 Pain 66.34 26.60 67.50 45.00 1 to 100 4 General health 46.13 23.06 45.00 36.25 1 to 100 3 Health change 48.75 32.05 50.00 50.00 1 to 100 3 *Normal distribution use mean and SD

Lung Cancer 2018 Australian PEEK Study 47 Section 2 Comparisons of SF36 scales were made by lung groups, χ2(2) = 9.88, p = 0.0071 (Table 2.9). Wilcoxon cancer stage. rank sum tests between groups indicated that those with stage IV lung cancer (median =75.00, IQR = 33.80) The lung cancer stage was described as those with scored significantly higher than those with stages I and early or stage I or II disease (N=17, 21.25%), those II lung cancer (median 55.00, IQR = 50.00), p=0.0110 with invasive or stage III disease (N=17.00, 21.25%), (Table 2.10). and those with advanced or stage IV disease (N=46, 57.50%). A Kruskal-Wallis test indicated a statistically significant difference in the “SF36 Role functioning/physical” Boxplots of each SF36 scale by lung cancer stage are between groups, χ2(2) = 6.85, p = 0.0326 (Table 2.9). displayed in Figures 2.2-2.10, summary statistics are However, Wilcoxon rank sum tests between groups displayed in Table 2.6. indicated no significant differences (Table 2.10).

A one-way ANOVA test was used with the assumptions A Kruskal-Wallis test indicated a statistically significant for response variable residuals were normally difference in the “SF36 Emotional well-being” distributed and variances of populations were equal between groups, χ2(2) = 7.67, p = 0.0216 (Table 2.0). (Table 2.7). A Tukey HSD test was used post-hoc to However, Wilcoxon rank sum tests between groups identify the source of any differences identified in the indicated no significant differences (Table 2.10). one-way ANOVA test (Table 2.8). When the assumptions for normality of residuals was not met, a Participants with stage IV lung cancer had median Kruskal-Wallis test was used (Table 2.9). Post hoc scores for the “SF36 Physical function” scale that pairwise comparisons using Wilcoxon rank sum test were in the second highest quintile, indicating good was used to identify the source of any differences physical function. The median score was identified in the Kruskal -Wallis test (Table 2.10). significantly higher than those with Stage I and II lung cancer, where the median score was in the A one way ANOVA test indicated a statistically middle of the scale indicating moderate physical significant difference in the “SF36 General health” function. scale between groups, F(2, 77) = 5.62 ,p = 0.0053 (Table 2.7). Post hoc comparisons using the Tukey HSD test Participants with stage IV lung cancer had mean indicated that the mean score for those with stage IV scores for the “SF36 General health” scale that disease (mean = 53.15, SD = 23.65) was significantly were in the middle of the scale indicating moderate higher than stage I and II (mean = 36.76, SD = 17.41), general health. The mean score was significantly p=0.0264; and those with stage IV disease (mean = higher than those with stage I and II, and stage III 53.15, SD = 23.65) was significantly higher than stage lung cancer which were both in the second lowest III disease (mean =36.47, SD= 20.37), p=0.0233 (Table quintiles indicating poor general health. 2.8).

A Kruskal-Wallis test indicated a statistically significant difference in the “SF36 Physical functioning” between

Lung Cancer 2018 Australian PEEK Study 48 Section 2 Table 2.6: Summary statistics SF36 by Lung cancer stage Count SF36 Scale Stage Percent Mean SD Median IQR (N=80) Stage I and II 17 21.25 45.29 28.48 55.00 50.00 Physical functioning Stage III 17 21.25 52.35 30.78 50.00 35.00 Stage IV 46 57.50 69.35 26.80 75.00 33.80 Stage I and II 17 21.25 35.29 41.51 0.00 75.00 Role functioning/physical Stage III 17 21.25 30.88 43.78 0.00 75.00 Stage IV 46 57.50 57.07 41.72 62.50 93.80 Stage I and II 17 21.25 47.06 47.23 33.33 100.00 Role functioning/emotional Stage III 17 21.25 45.10 44.00 33.33 100.00 Stage IV 46 57.50 63.04 42.88 100.00 66.70 Stage I and II 17 21.25 37.35 19.29 45.00 30.00 Energy/Fatigue* Stage III 17 21.25 40.00 17.59 45.00 25.00 Stage IV 46 57.50 46.74 21.30 42.50 33.80 Stage I and II 17 21.25 59.76 14.39 60.00 16.00 Emotional well-being Stage III 17 21.25 58.59 13.11 56.00 4.00 Stage IV 46 57.50 69.39 19.55 76.00 24.00 Stage I and II 17 21.25 58.82 25.68 50.00 25.00 Social functioning Stage III 17 21.25 52.21 22.64 50.00 37.50 Stage IV 46 57.50 65.22 31.61 75.00 56.20 Stage I and II 17 21.25 58.38 22.50 57.50 32.50 Pain Stage III 17 21.25 63.68 32.56 67.50 55.00 Stage IV 46 57.50 70.27 25.35 77.50 45.00 Stage I and II 17 21.25 36.76 17.41 40.00 25.00 General health Stage III 17 21.25 36.47 20.37 30.00 30.00 Stage IV 46 57.50 53.15 23.65 55.00 38.80 Stage I and II 17 21.25 41.18 27.87 50.00 25.00 Health change Stage III 17 21.25 36.76 28.11 25.00 25.00 Stage IV 46 57.50 55.98 33.41 50.00 68.80

Table 2.7: SF36 by Lung cancer stage ANOVA table

SF36 Scale Sum of squares DF Mean Square F p

Between groups 1330 2 665.20 1.64 0.2020 Energy/Fatigue Within groups 31317 77 406.70 Total 32647 79 Between groups 5346 2 2673 5.62 0.0053* General health Within groups 36653 77 476 Total 41999 79

Lung Cancer 2018 Australian PEEK Study 49 Section 2 Table 2.8: SF36 by Lung cancer stage, post hoc Tukey HSD

General health Difference Lower Upper p adjusted

Stage III-Stages I and II -0.29 -18.18 17.59 0.9991 Stage IV --Stages I and II 16.39 1.59 31.19 0.0264* Stage IV-Stage III 16.68 1.88 31.48 0.0233*

Table 2.9: SF36 by Lung cancer stage Kruskal-Wallis test

SF36 Scale X2 df p

Physical functioning 9.88 2 0.0071* Role functioning/physical 6.85 2 0.0326* Role functioning/emotional 3.00 2 0.2230 Emotional well-being 7.67 2 0.0216* Social functioning 3.99 2 0.1361 Pain 2.89 2 0.2353 Health change 5.67 2 0.0587

Table 2.10: SF36 by Lung cancer stage, post hoc pairwise comparisons using Wilcoxon rank sum test

SF36 Scale Group Stage I and II Stage III

Stage III 0.7040 Physical functioning Stage IV 0.0110* 0.0700 Stage III 0.7270 Role functioning/physical Stage IV 0.0920 0.0790 Stage III 0.6250 Emotional well-being Stage IV 0.0620 0.0610

SF36 Physical functioning SF36 Role functioning/physical 100 100 80 80 60 60 40 40 20 20 0 0

Stage I and II Stage III Stage IV Stage I and II Stage III Stage IV

Figure 2.2: Boxplot of SF36 Physical functioning by Lung Figure 2.3: Boxplot of SF36 Role functioning/physical by cancer stage Lung cancer stage

Lung Cancer 2018 Australian PEEK Study 50 Section 2

SF36 Role functioning/emotional SF36 Energy/Fatigue 100 80 80 60 60 40 40 20 20 0 0

Stage I and II Stage III Stage IV Stage I and II Stage III Stage IV

Figure 2.4: Boxplot of SF36 Role functioning/emotional Figure 2.5: Boxplot of SF36 Energy/fatigue by Lung by Lung cancer stage cancer stage

SF36 Emotional well-being SF36 Social functioning 100 100 90 80 80 60 70 60 40 50 20 40 30 0

Stage I and II Stage III Stage IV Stage I and II Stage III Stage IV

Figure 2.6: Boxplot of SF36 Emotional well-being by Lung 2.7: Boxplot of SF36 Social functioning by Lung cancer cancer stage stage

SF36 Pain SF36 General health 100 100 80 80 60 60 40 40 20 20 0

Stage I and II Stage III Stage IV Stage I and II Stage III Stage IV

Figure 2.8: Boxplot of SF36 Pain by Lung cancer stage Figure 2.9: Boxplot of SF36 General health by Lung cancer stage

Lung Cancer 2018 Australian PEEK Study 51 Section 2

SF36 Health change 100 80 60 40 20 0

Stage I and II Stage III Stage IV

Figure 2.10: Boxplot of SF36 Health change by Lung cancer stage

Lung Cancer 2018 Australian PEEK Study 52 Section 2 Comparisons of SF36 scales by distant metastases change” scale was significantly higher for those with distant metastases (Median = 50.00, IQR =68.75) Comparisons of SF36 scales were made by distant compared to those with no distant metastases metastases status. Distant metastases were described (Median = 25.00, IQR = 25.00), W=549.00, p=0.0196. as those that had disease with distant metastases (excluding those with spread to lymph nodes only) Those with distant metastases had a median score (N=46, 57.50%) compared to those with no distant for the “SF36 Physical functioning” scale that was metastases (N=34, 42.50%). in the second highest quintile, indicating good physical functioning. The median score was Assumptions for normality and variance were not met, significantly higher than those with no distant a Wilcoxon rank sum test with continuity correction metastases, that were in the middle of the scale, was used (Table 2.10). indicating moderate physical functioning.

Boxplots of each SF36 scale by distant metastases are Those with distant metastases had a median score displayed in Figures 2.11 to 2.19 to summary statistics for the “SF36 Role functioning/physical” scale that are displayed in Table 2.11. was in the second highest quintile, indicating good role functioning due to physical health. The median A Wilcoxon rank sum test with continuity correction score was significantly higher than those with no indicated that the median score for the “SF36 physical distant metastases, that were in the lowest quintile, functioning” was significantly higher for those with indicating very poor role functioning due to physical distant metastases (Median = 75.00, IQR =33.75) health. compared to those with no distant metastases (Median = 50.00, IQR = 38.75), W=466.00, p=0.0021. Those with distant metastases had a median score for the “SF36 Emotional well-being” scale that was A Wilcoxon rank sum test with continuity correction in the second highest quintile, indicating good indicated that the median score for the “SF36 role emotional well-being. The median score was functioning/physical” was significantly higher for significantly higher than those with no distant those with distant metastases (Median = 62.50, IQR metastases, that were in the middle of the scale, =93.75) compared to those with no distant metastases indicating moderate emotional well-being. (Median = 0.00, IQR = 75.00), W=528.00, p=0.0095. Those with distant metastases had a median score A Wilcoxon rank sum test with continuity correction for the “SF36 General health” scale that was in the indicated that the median score for the “SF36 middle of the scale, indicating moderate general emotional well-being” scale was significantly higher health. The median score was significantly higher for those with distant metastases (Median = 76.00, IQR than those with no distant metastases, that was in =24.00) compared to those with no distant metastases the second lowest quintile, indicating poor general (Median = 60.00, IQR = 8.00) ,W=501.00, p=0.0061. health.

A Wilcoxon rank sum test with continuity correction Those with distant metastases had a median score indicated that the median score for the “SF36 general for the “SF36 Health change” scale that was in the health” scale was significantly higher for those with middle of the scale, indicating moderate scores. distant metastases (Median = 55.00, IQR =38.75) The median score was significantly higher than compared to those with no distant metastases those with no distant metastases, that were in the (Median = 32.50, IQR = 28.75), W=459.50, p=0.0017. second lowest quintile, indicating poor scores.

A Wilcoxon rank sum test with continuity correction indicated that the median score for the “SF36 health

Lung Cancer 2018 Australian PEEK Study 53 Section 2 Table 2.11: Summary statistics Wilcoxon rank sum test with continuity correction SF36 scales by distant metastases

SF36 Scale Group Count Percent Median IQR W p

No distant metastases 34 24.50 50.00 38.75 466.00 0.0021* Physical functioning Distant metastases 46 47.50 75.00 33.75 Role No distant metastases 34 24.50 0.00 75.00 528.00 0.0095* functioning/physical Distant metastases 46 47.50 62.50 93.75 Role No distant metastases 34 24.50 33.33 100.00 617.50 0.0878 functioning/emotional Distant metastases 46 47.50 100.00 66.67 No distant metastases 34 24.50 45.00 28.75 630.00 0.1391 Energy/Fatigue Distant metastases 46 47.50 42.50 33.75 No distant metastases 34 24.50 60.00 8.00 501.00 0.0061* Emotional well-being Distant metastases 46 47.50 76.00 24.00 No distant metastases 34 24.50 50.00 37.50 594.00 0.0651 Social functioning Distant metastases 46 47.50 75.00 56.25 No distant metastases 34 24.50 67.50 42.50 631.00 0.1403 Pain Distant metastases 46 47.50 77.50 45.00 No distant metastases 34 24.50 32.50 28.75 459.50 0.0017* General health Distant metastases 46 47.50 55.00 38.75 No distant metastases 34 24.50 25.00 25.00 549.00 0.0196* Health change Distant metastases 46 47.50 50.00 68.75 * Statistically significant at p<0.05

SF36 Physical functioning SF36 Role functioning/physical 100 100 80 80 60 60 40 40 20 20 0 0

No distant metastases Distant metastases No distant metastases Distant metastases

Figure 2.11: Boxplot of SF36 Physical functioning by Figure 2.12: Boxplot of SF36 Role functioning/physical by distant metastases distant metastases

Lung Cancer 2018 Australian PEEK Study 54 Section 2

SF36 Role functioning/emotional SF36 Energy/fatigue 100 80 80 60 60 40 40 20 20 0 0

No distant metastases Distant metastases No distant metastases Distant metastases

Figure 2.13: Boxplot of SF36 Role functioning/emotional Figure 2.14: Boxplot of SF36 Energy/fatigue by distant by distant metastases metastases

SF36 Emotional well-being SF36 Social functioning 100 100 90 80 80 60 70 60 40 50 20 40 30 0

No distant metastases Distant metastases No distant metastases Distant metastases

Figure 2.15: Boxplot of SF36 Emotional well-being by Figure 2.16: Boxplot of SF36 Social functioning by distant distant metastases metastases

SF36 Pain SF36 General health 100 100 80 80 60 60 40 40 20 20 0

No distant metastases Distant metastases No distant metastases Distant metastases

Figure 2.17: Boxplot of SF36 Pain by distant metastases Figure 2.18: Boxplot of SF36 General health by distant metastases

Lung Cancer 2018 Australian PEEK Study 55 Section 2

SF36 Health change 100 80 60 40 20 0

No distant metastases Distant metastases

Figure 2.19: Boxplot of SF36 Health change by distant metastases

Lung Cancer 2018 Australian PEEK Study 56 Section 2 Comparisons of SF36 scales by brain metastases A Kruskal-Wallis test indicated a statistically significant difference in the “SF36 General health” scale between Comparisons of SF36 scales were by brain metastases groups, χ2(2) = 9.91, p = 0.0070 (Table 2.14). Wilcoxon status. Those with brain metastases (N=22, 27.50%) rank sum tests between groups indicated that those were compared to those with other distant metastases with brain metastases (median =55.00, IQR = 38.75) (excluding those with spread to lymph nodes only) scored significantly higher than those with no distant (N=24, 30.00 %), and those with no distant metastases metastases (median =32.50, IQR = 28.75), p=0.0210; (N=34, 42.50%). and those with other distant metastases (median =55.00, IQR = 36.25) scored significantly higher than Boxplots of each SF36 scale by brain metastases are those with no distant metastases (median =32.50, IQR displayed in Figures 2.20 to 2.28 to summary statistics = 28.75), p=0.0170 (Table 2.15). are displayed in Table 2.12. A Kruskal-Wallis test indicated statistically significant A one-way ANOVA test was used with the assumptions differences between groups in the “SF36 role for response variable residuals were normally function/physical” [χ2(2) = 6.76, p = 0.0340], and “SF36 distributed and variances of populations were equal Health change” [χ2(2) = 6.12, p = 0.0470] (Table 2.14). (Table 2.13). When the assumptions for normality of However, Wilcoxon rank sum tests between groups residuals was not met, a Kruskal-Wallis test was used indicated no significant differences (Table 2.15). (Table 2.14). Post hoc pairwise comparisons using Wilcoxon rank sum test was used to identify the source Those with brain metastases and those with other of any differences identified in the Kruskal -Wallis test distant metastases had median scores for the “SF36 (Table 2.15). Physical functioning” scale that were in the second highest quintile, indicating good physical A Kruskal-Wallis test indicated a statistically significant functioning. These median scores were significantly difference in the “SF36 physical functioning” [χ2(2) = higher than the median score for those with no 9.52, p = 0.085] (Table 2.14). Wilcoxon rank sum tests distant metastases, which was in the middle of the between groups indicated that those with brain scale indicating moderate physical functioning. metastases (median =77.50, IQR = 33.75) scored significantly higher than those with no distant Those with brain metastases and those with other metastases (median =50.00, IQR = 38.75), p=0.0240; distant metastases had median scores that were and those with other distant metastases (median significantly higher than those with no distant =72.50, IQR = 28.75) scored significantly higher than metastases for the “SF36 Emotional well-being” those with no distant metastases (median =50.00, IQR scale. The median scores for brain metastases, and = 38.75), p=0.0190 (Table 2.15). other distant metastases, were in the second highest quintile, indicating good scores. The A Kruskal-Wallis test indicated a statistically significant median score for no distant metastases was in the difference in the “SF36 Emotional well-being” middle of the scale indicating a moderate score. between groups, χ2(2) = 7.55, p = 0.0230 (Table 2.14). Wilcoxon rank sum tests between groups indicated Those with brain metastases and those with other that those with brain metastases (median =76.00, IQR distant metastases had median scores for the “SF36 = 23.00) scored significantly higher than those with no General health” scale that were in the middle of the distant metastases (median =60.00, IQR = 8.00), scale, indicating moderate general health. These p=0.0450; and those with other distant metastases median scores were significantly higher than the (median =76.00, IQR = 31.00) scored significantly median score for those with no distant metastases, higher than those with no distant metastases (median which was in the second lowest quintile indicating =60.00, IQR = 8.00), p=0.0450 (Table 2.15). poor general health.

Lung Cancer 2018 Australian PEEK Study 57 Section 2 Table 2.12 Summary statistics SF36 scales by brain metastases

SF36 Scale Group Count Percent Mean SD Median IQR

Brain metastases 22 27.50 68.41 28.88 77.50 33.75 Physical functioning Other distant metastases 24 30.00 70.21 25.34 72.50 28.75 No distant metastases 34 42.50 48.82 29.41 50.00 38.75 Brain metastases 22 27.50 55.68 45.60 62.50 100.00 Role functioning/physical Other distant metastases 24 30.00 58.33 38.78 62.50 75.00 No distant metastases 34 42.50 33.09 42.07 0.00 75.00 Brain metastases 22 27.50 62.12 42.78 83.33 66.67 Role functioning/emotional Other distant metastases 24 30.00 63.89 43.87 100.00 75.00 No distant metastases 34 42.50 46.08 44.96 33.33 100.00 Brain metastases 22 27.50 45.68 19.78 50.00 22.50 Energy/Fatigue* Other distant metastases 24 30.00 47.71 22.98 37.50 36.25 No distant metastases 34 42.50 38.68 18.23 45.00 28.75 Brain metastases 22 27.50 69.64 18.17 76.00 23.00 Emotional well-being Other distant metastases 24 30.00 69.17 21.12 76.00 31.00 No distant metastases 34 42.50 59.18 13.57 60.00 8.00 Brain metastases 22 27.50 65.34 31.32 75.00 34.38 Social functioning Other distant metastases 24 30.00 65.10 32.55 75.00 62.50 No distant metastases 34 42.50 55.51 24.07 50.00 37.50 Brain metastases 22 27.50 74.66 23.65 80.00 41.88 Pain Other distant metastases 24 30.00 66.25 26.67 67.50 45.00 No distant metastases 34 42.50 61.03 27.69 67.50 42.50 Brain metastases 22 27.50 52.73 24.38 55.00 38.75 General health Other distant metastases 24 30.00 53.54 23.47 55.00 36.25 No distant metastases 34 42.50 36.62 18.66 32.50 28.75 Brain metastases 22 27.50 60.23 37.53 75.00 68.75 Health change Other distant metastases 24 30.00 52.08 29.41 50.00 31.25 No distant metastases 34 42.50 38.97 27.66 25.00 25.00

Table 2.13: SF36 scales by brain metastases ANOVA table

SF36 Scale Sum of squares DF Mean Square F p

Between groups 1318 2 659.00 1.62 0.2050 Energy/Fatigue Within groups 31329 77 406.90 Total 32647 79

Lung Cancer 2018 Australian PEEK Study 58 Section 2 Table 2.14: SF36 scales by brain metastases Kruskal-Wallis test table

SF36 Scale X2 df p

Physical functioning 9.54 2 0.0085* Role functioning/physical 6.76 2 0.0340* Role functioning/emotional 2.95 2 0.2291 Emotional well-being 7.55 2 0.0230* Social functioning 3.43 2 0.1795 Pain 3.38 2 0.1847 General health 9.91 2 0.0070* Health change 6.12 2 0.0470* Table 2.15: SF36 scales by brain metastases post hoc Wilcoxon rank sum test

SF36 Scale Group Brain metastases Other distant metastases

Other distant metastases 0.9380 Physical functioning No distant metastases 0.0240* 0.0190* Other distant metastases 0.9820 Role functioning/physical No distant metastases 0.0590 0.0590 Other distant metastases 0.7900 Emotional well-being No distant metastases 0.0450* 0.0450* Other distant metastases 0.9030 General health No distant metastases 0.0210* 0.0170* Other distant metastases 0.3470 Health change No distant metastases 0.0760 0.1370

SF36 Physical functioning SF36 Role functioning/physical 100 100 80 80 60 60 40 40 20 20 0 0

Brain mets Other distant mets No distant mets Brain mets Other distant mets No distant mets

Figure 2.20: Boxplot of SF36 Physical functioning by brain Figure 2.21: Boxplot of SF36 Role functioning/physical by metastases brain metastases

Lung Cancer 2018 Australian PEEK Study 59 Section 2

SF36 Role functioning/emotional SF36 Energy/Fatigue 100 80 80 60 60 40 40 20 20 0 0

Brain mets Other distant mets No distant mets Brain mets Other distant mets No distant mets

Figure 2.22: Boxplot of SF36 Role functioning/emotional Figure 2.23: Boxplot of SF36 Energy/fatigue by brain by brain metastases metastases

SF36 Emotional well-being SF36 Social functioning 100 100 90 80 80 60 70 60 40 50 20 40 30 0

Brain mets Other distant mets No distant mets Brain mets Other distant mets No distant mets

Figure 2.24: Boxplot of SF36 Emotional well-being by Figure 2.25: Boxplot of SF36 Social functioning by brain brain metastases metastases

SF36 Pain SF36 General health 100 100 80 80 60 60 40 40 20 20 0

Brain mets Other distant mets No distant mets Brain mets Other distant mets No distant mets

Figure 2.26: Boxplot of SF36 Pain by brain metastases Figure 2.27: Boxplot of SF36 General health by brain metastases

Lung Cancer 2018 Australian PEEK Study 60 Section 2

SF36 Health change 100 80 60 40 20 0

Brain mets Other distant mets No distant mets

Figure 2.28: Boxplot of SF36 Health change by brain metastases

Lung Cancer 2018 Australian PEEK Study 61 Section 2 Comparisons of SF36 scales by energy/fatigue (Median = 30.00, IQR = 25.00) [W=1263.00, p<0.0001]; the median score for the “SF36 Health change” was Comparisons of SF36 scales were made by significantly higher for those with better energy/fatigue status. Energy/fatigue status was energy/fatigue (Median = 50.00, IQR =50.00) defined as those with a higher than average score for compared to those with worse energy/fatigue (Median the cohort in the SF36 energy/fatigue scale “Better = 25.00, IQR = 25.00) [W=1178.00, p=0.0002]. energy/fatigue” (N=42, 52.50%) compared to those with an average or less score “Worse energy/fatigue” (N=38, 47.50%). Comparisons by energy/fatigue for the SF36 energy/fatigue scale were excluded due to selection bias. Boxplots of each SF36 scale by energy/fatigue are displayed in Figures 2.29-2.36.

A two-sample t-test was used when assumptions for normality and variance were met (Table 2.16), or when assumptions for normality and variance were not met, a Wilcoxon rank sum test with continuity correction was used (Table 2.17). A two sample t-test indicated that the mean score for the “SF36 emotional well- being” [t(78) = 3.41, p=0.0010] was significantly better for those with better energy/fatigue (Mean = 71.17, SD= 16.16) compared to those with worse energy/fatigue (Mean = 58.31, SD = 17.49).

Wilcoxon rank sum tests with continuity correction indicated that the median score for the “SF36 Physical functioning” was significantly higher for those with better energy/fatigue (Median = 72.50, IQR =38.75) compared to those with worse energy/fatigue (Median = 55.00, IQR = 42.50) [W=1134.00, p=0.0012]; the median score for the “SF36 Role functioning/physical” was significantly higher for those with better energy/fatigue (Median = 75.00, IQR =100.00) compared to those with worse energy/fatigue (Median = 0.00, IQR = 50.00) [W=1143.00, p=0.0005]; the median score for the “SF36 Role functioning/emotional” was significantly higher for those with better energy/fatigue (Median = 100.00, IQR =66.67) compared to those with worse energy/fatigue (Median = 33.33, IQR = 100.00) [W=1063.00, p=0.0064]; the median score for the “SF36 Social functioning” was significantly higher for those with better energy/fatigue (Median = 75.00, IQR =46.88) compared to those with worse energy/fatigue (Median = 50.00, IQR =34.38) [W=1252.00, p<0.0001]; the median score for the “SF36 Pain” was significantly higher for those with better energy/fatigue (Median = 80.00, IQR =30.00) compared to those with worse energy/fatigue (Median = 51.25, IQR = 44.38) [W=1158.00, p=0.0005]; the median score for the “SF36 General health” was significantly higher for those with better energy/fatigue (Median = 60.00, IQR =33.75) compared to those with worse energy/fatigue

Lung Cancer 2018 Australian PEEK Study 62 Section 2

The “SF36 Emotional well-being” mean score for participants with better energy/fatigue was in the second highest quintile indicating good emotional well-being. The mean score was significantly higher than the mean score for participants with worse energy/fatigue which was in the middle of the scale indicating moderate emotional well-being.

The “SF36 physical functioning”, “SF36 Social functioning”, and “SF36 Pain” median scores for participants with better energy/fatigue were in the second highest quintile indicating good physical functioning, social functioning and less pain. These scores were significantly higher than the median scores for participants with worse energy fatigue which were in the middle of the scale, indicating moderate physical functioning, social functioning and moderate pain.

The “SF36 Role functioning/physical” median score for participants with better energy/fatigue was in the second highest quintile indicating good role functioning due to physical health. These scores were significantly higher than the median score for participants with worse energy/fatigue which was in the lowest quintile indicating very poor role functioning due to physical health.

The “SF36 Role functioning/emotional” median score for participants with better energy/fatigue was in the highest quintile indicating very good role functioning due to emotional problems. This was significantly higher compared to and the median score for participants with worse energy/fatigue which was in the second lowest quintile indicating poor role functioning due to emotional problems.

The “SF36 General health”, and “SF36 Health change”, median scores for participants with better energy/fatigue were in the middle of the scale, indicating moderate general health, and moderate health change. These scores were significantly higher compared to and the median score for participants with worse energy/fatigue which was in the second lowest quintile indicating poor general health, and poor health change.

Lung Cancer 2018 Australian PEEK Study 63 Section 2 Table 2.16: Summary statistics and two sample t-test SF36 scales by Energy/fatigue

SF36 Scale Group Count Percent Mean SD t dF p

Better energy/fatigue 42 52.50 71.14 16.16 3.41 78 0.0010* Emotional well-being Worse energy/fatigue 38 47.50 58.32 17.49 * Statistically significant at p<0.05

Table 2.17: Summary statistics Wilcoxon rank sum test with continuity correction SF36 scales by Energy/fatigue

SF36 Scale Group Count Percent Median IQR W p

Better energy/fatigue 42 52.50 72.50 38.75 1134.00 0.0012* Physical functioning Worse energy/fatigue 38 47.50 55.00 42.50 Role Better energy/fatigue 42 52.50 75.00 100.00 1143.00 0.0005* functioning/physical Worse energy/fatigue 38 47.50 0.00 50.00 Role Better energy/fatigue 42 52.50 100.00 66.67 1063.00 0.0064* functioning/emotional Worse energy/fatigue 38 47.50 33.33 100.00 Better energy/fatigue 42 52.50 75.00 46.88 1252.00 <0.0001* Social functioning Worse energy/fatigue 38 47.50 50.00 34.38 Better energy/fatigue 42 52.50 80.00 30.00 1158.00 0.0005* Pain Worse energy/fatigue 38 47.50 51.25 44.38 Better energy/fatigue 42 52.50 60.00 33.75 1263.00 <0.0001* General health Worse energy/fatigue 38 47.50 30.00 25.00 Better energy/fatigue 42 52.50 50.00 50.00 1178.00 0.0002* Health change Worse energy/fatigue 38 47.50 25.00 25.00 * Statistically significant at p<0.05

SF36 Physical functioning SF36 Role functioning/physical 100 100 80 80 60 60 40 40 20 20 0 0

Better energy/fatigue Worse energy/fatigue Better energy/fatigue Worse energy/fatigue

Figure 2.29: Boxplot of SF36 physical functioning by Figure 2.30: Boxplot of SF36 Role functioning/physical by Energy/fatigue Energy/fatigue

Lung Cancer 2018 Australian PEEK Study 64 Section 2

SF36 Role functioning/emotional SF36 Emotional well-being 100 100 90 80 80 60 70 60 40 50 20 40 30 0

Better energy/fatigue Worse energy/fatigue Better energy/fatigue Worse energy/fatigue

Figure 2.31: Boxplot of SF36 Role functioning/emotional Figure 2.32: Boxplot of SF36 Emotional well-being by by Energy/fatigue Energy/fatigue

SF36 Social functioning SF36 Pain 100 100 80 80 60 60 40 40 20 20 0 0

Better energy/fatigue Worse energy/fatigue Better energy/fatigue Worse energy/fatigue

Figure 2.33: Boxplot of SF36 Social functioning by Figure 2.34: Boxplot of SF36 Pain by Energy/fatigue Energy/fatigue

SF36 General health SF36 Health change 100 100 80 80 60 60 40 40 20 20 0

Better energy/fatigue Worse energy/fatigue Better energy/fatigue Worse energy/fatigue

2.35: Boxplot of SF36 General health by Energy/fatigue Figure 2.36: Boxplot of SF36 Health change by Energy/fatigue

Lung Cancer 2018 Australian PEEK Study 65 Section 2 Comparisons of SF36 scales by pain The “SF36 Energy/fatigue” mean score for Comparisons of SF36 scales were made by pain status. participants with less pain was in the in the middle Pain status was defined as those that scored above of the scale indicating moderate energy/fatigue. average for the cohort in the SF36 Pain scale, less pain, These scores were significantly higher compared to (N=48, 60.00%) compared to those that scored average the mean score for participants with more pain was or below, More pain (N=32, 40.00%). Comparisons by in the second lowest quintile indicating poor pain for the SF36 Pain scale were excluded due to energy/fatigue. selection bias. Boxplots of each SF36 scale by pain are displayed in Figures 2.37-2.44. The “SF36 physical functioning”, and “SF36 Social functioning”, median scores for participants with A two-sample t-test was used when assumptions for less pain were in the second highest quintile normality and variance were met (Table 2.18), or when indicating good scores. These scores were assumptions for normality and variance were not met, significantly higher compared to participants with a Wilcoxon rank sum test with continuity correction more pain with median scores in the middle of the was used (Table 2.19). scale, indicating moderate scores.

A two sample t-test indicated that the mean score for The “SF36 Role functioning/physical” median score the “SF36 energy/fatigue” scale [t(78) = 4.45, for participants with less pain was in the second p<0.0001] was significantly better for those with less highest quintile indicating good role functioning pain (mean = 50.73 SD= 19.89) compared to those with due to physical health. These scores were more pain (Mean = 32.19, SD = 15.50). significantly higher compared to and the median score for participants with more pain which was in Wilcoxon rank sum tests with continuity correction the lowest quintile indicating very poor role indicated that the median score for the “SF36 Physical functioning due to physical health. functioning” was significantly higher for those with less pain (Median = 80.00, IQR =31.25) compared to those The “SF36 Role functioning/emotional” median with more pain (Median = 47.50, IQR = 45.00) score for participants with less pain was in the [W=1232.00, p<0.0001]; the median score for the SF36 highest quintile indicating very good role Role functioning/physical was significantly higher for functioning due to emotional problems. These those with less pain (Median = 75.00, IQR =50.00) scores were significantly higher compared to and compared to those with more pain (Median = 0.00, IQR the median score for participants with more pain = 25.00) [W=1260.00, p<0.0001]; the median score for which was in the lowest quintile indicating very the “SF36 Role functioning/emotional” was poor role functioning due to emotional problems. significantly higher for those with less pain (Median = 100.00, IQR =66.67) compared to those with more pain The “SF36 General health”, and “SF36 Health (Median = 0.00, IQR = 66.67) [W=1153.00, p<0.0001]; change”, median scores for participants with less the median score for the “SF36 Social functioning” was pain were in the middle of the scale, indicating significantly higher for those with less pain (Median = moderate general health, and moderate health 75.00, IQR =37.50) compared to those with more pain change. These scores were significantly higher (Median = 50.00, IQR =28.13) [W=1301.50, p<0.0001]; compared to and the median score for participants the median score for the “SF36 General health” was with more pain which was in the second lowest significantly higher for those with less pain (Median = quintile indicating poor general health, and poor 57.50, IQR =35.00) compared to those with more pain health change. (Median = 30.00, IQR = 25.00) [W=1201.00, p<0.0001]; the median score for the “SF36 Health change” was significantly higher for those with less pain (Median = 50.00, IQR =50.00) compared to those with more pain (Median = 25.00, IQR = 31.25) [W=1053.50, p=0.0039].

Table 2.18: Summary statistics and two sample t-test SF36 scales by Pain

Lung Cancer 2018 Australian PEEK Study 66 Section 2

SF36 Scale Group Count Percent Mean SD t dF p

Less pain 48 60 50.73 19.89 4.45 78 <0.0001* Energy/Fatigue More pain 32 40 32.19 15.50 Less pain 48 60 67.58 17.21 1.56 78 0.1217 Emotional well-being More pain 32 40 61.25 18.50

* Statistically significant at p<0.05 Table 2.19: Summary statistics Wilcoxon rank sum test with continuity correction SF36 scales by Energy/fatigue

SF36 Scale Group Count Percent Median IQR W p

Less pain 48 60 80.00 31.25 1232.00 <0.0001* Physical functioning More pain 32 40 47.50 45.00 Less pain 48 60 75.00 50.00 1260.00 <0.0001* Role functioning/physical More pain 32 40 0.00 25.00 Role Less pain 48 60 100.00 66.67 1153.00 <0.0001* functioning/emotional More pain 32 40 0.00 66.67 Less pain 48 60 75.00 37.50 1301.50 <0.0001* Social functioning More pain 32 40 50.00 28.13 Less pain 48 60 57.50 35.00 1201.00 <0.0001* General health More pain 32 40 30.00 25.00 Less pain 48 60 50.00 50.00 1053.50 0.0039* Health change More pain 32 40 25.00 31.25

* Statistically significant at p<0.05

SF36 Physical functioning SF36 Role functioning/physical 100 100 80 80 60 60 40 40 20 20 0 0

Less pain More pain Less pain More pain

Figure 2.37: Boxplot of SF36 physical functioning by pain Figure 2.38: Boxplot of SF36 Role functioning/physical by pain

Lung Cancer 2018 Australian PEEK Study 67 Section 2

SF36 Role functioning/emotional SF36 Energy/Fatigue 100 80 80 60 60 40 40 20 20 0 0

Less pain More pain Less pain More pain

Figure 2.39: Boxplot of SF36 Role functioning/ emotional Figure 2.40: Boxplot of SF36 Energy/fatigue by pain by pain

SF36 Emotional well-being SF36 Social functioning 100 100 90 80 80 60 70 60 40 50 20 40 30 0

Less pain More pain Less pain More pain

Figure 2.41: Boxplot of SF36 Emotional well-being by pain Figure 2.42: Boxplot of SF36 Social functioning by pain

SF36 General health SF36 Health change 100 100 80 80 60 60 40 40 20 20 0

Less pain More pain Less pain More pain

Figure 2.43: Boxplot of SF36 General health by pain Figure 2.44: Boxplot of SF36 health change by pain

Lung Cancer 2018 Australian PEEK Study 68 Section 2 Comparisons of SF36 scales by gender rank sum test with continuity correction was used Comparisons of SF36 scales were made by gender, (Table 2.21). females (N=66, 82.50%) were compared with males (N=14, 17.50%). Boxplots of each SF36 scale by gender No significant differences were observed between are displayed in Figures 2.45-2.53. A two-sample t-test females and males for any of the SF36 scales. was used when assumptions for normality and variance were met (Table 2.20), or when assumptions for normality and variance were not met, a Wilcoxon

Table 2.20: Summary statistics and two sample t-test SF36 scales by gender

SF36 Scale Group Count Percent Mean SD t dF p

Female 66 82.50 43.33 19.75 0.02 78 0.9843 Energy/Fatigue* Male 14 17.50 43.21 23.66 Female 66 82.50 65.58 17.73 0.57 78 0.5716 Emotional well-being Male 14 17.50 62.57 19.13 Table 2.21: Summary statistics Wilcoxon rank sum test with continuity correction SF36 scales by gender

SF36 Scale Group Count Percent Median IQR W p

Female 66 82.50 65.00 43.75 407.50 0.4928 Physical functioning Male 14 17.50 72.50 60.00 Female 66 82.50 50.00 100.00 410.00 0.4931 Role functioning/physical Male 14 17.50 50.00 93.75 Role Female 66 82.50 50.00 100.00 355.00 0.1493 functioning/emotional Male 14 17.50 100.00 58.33 Female 66 82.50 62.50 34.38 544.00 0.2968 Social functioning Male 14 17.50 43.75 56.25 Female 66 82.50 68.75 45.00 471.50 0.9087 Pain Male 14 17.50 62.50 42.50 Female 66 82.50 45.00 33.75 441.00 0.7946 General health Male 14 17.50 45.00 42.50 Female 66 82.50 50.00 50.00 546.50 0.2724 Health change Male 14 17.50 25.00 25.00

SF36 Physical functioning SF36 Role functioning/physical 100 100 80 80 60 60 40 40 20 20 0 0

Female Male Female Male

Lung Cancer 2018 Australian PEEK Study 69 Section 2 Figure 2.45: Boxplot of SF36 Physical functioning by Figure 2.46: Boxplot of SF36 Role functioning/physical by gender gender

SF36 Role functioning/emotional SF36 Energy/Fatigue 100 80 80 60 60 40 40 20 20 0 0

Female Male Female Male

Figure 2.47: Boxplot of SF36 Role functioning/emotional Figure 2.48: Boxplot of SF36 Energy/fatigue by by gender by gender

SF36 Emotional well-being SF36 Social functioning 100 100 90 80 80 60 70 60 40 50 20 40 30 0

Female Male Female Male

Figure 2.49: Boxplot of SF36 Emotional well-being by Figure 2.50: Boxplot of SF36 Social functioning by gender gender

SF36 Pain SF36 General health 100 100 80 80 60 60 40 40 20 20 0

Female Male Female Male

Figure 2.51: Boxplot of SF36 Pain by gender Figure 2.52: Boxplot of SF36 General health by gender

Lung Cancer 2018 Australian PEEK Study 70 Section 2

SF36 Health change 100 80 60 40 20 0

Female Male

Figure 2.53: Boxplot of SF36 Health change by gender

Lung Cancer 2018 Australian PEEK Study 71 Section 2 Comparisons of SF36 scales by age variance were met (Table 2.22), or when assumptions for normality and variance were not met, a Wilcoxon Comparisons of SF36 scales were made by age, those rank sum test with continuity correction was used that were aged 55 and older, older (55 and older) (Table 2.23). (N=36, 45.00%) were compared with those that were aged between 18 and 54, younger (18 to 54), (N=44, No significant differences were observed between 55.00%). Boxplots of each SF36 scale by age are older (55 and older) and younger (18 to 24) displayed in Figures 2.54-2.62. A two-sample t-test participants for any of the SF36 scales. was used when assumptions for normality and

Table 2.22: Summary statistics and two sample t-test SF36 scales by Age

SF36 Scale Group Count Percent Mean SD t dF p

Older (55 and older) 36 45.00 42.50 19.73 -0.32 78 0.7487 Energy/Fatigue* Younger (18 to 54) 44 55.00 43.98 21.01 Older (55 and older) 36 45.00 61.33 17.13 -1.70 78 0.0931 Emotional well-being Younger (18 to 54) 44 55.00 68.09 18.13 Older (55 and older) 36 45.00 45.14 21.86 -0.34 78 0.7317 General health Younger (18 to 54) 44 55.00 46.93 24.21

Table 2.23: Summary statistics Wilcoxon rank sum test with continuity correction SF36 scales by Age

SF36 Scale Group Count Percent Median IQR W p

Older (55 and older) 36 45.00 65.00 46.25 703.00 0.3906 Physical functioning Younger (18 to 54) 44 55.00 65.00 41.25 Role Older (55 and older) 36 45.00 50.00 81.25 750.00 0.6731 functioning/physical Younger (18 to 54) 44 55.00 50.00 100.00 Role Older (55 and older) 36 45.00 33.33 100.00 671.50 0.2146 functioning/emotional Younger (18 to 54) 44 55.00 83.33 75.00 Older (55 and older) 36 45.00 62.50 25.00 826.50 0.7396 Social functioning Younger (18 to 54) 44 55.00 62.50 50.00 Older (55 and older) 36 45.00 67.50 37.50 764.00 0.7889 Pain Younger (18 to 54) 44 55.00 68.75 45.00 Older (55 and older) 36 45.00 50.00 31.25 748.00 0.6642 Health change Younger (18 to 54) 44 55.00 50.00 56.25

Lung Cancer 2018 Australian PEEK Study 72 Section 2

SF36 Physical functioning SF36 Role functioning/physical 100 100 80 80 60 60 40 40 20 20 0 0

Older Younger Older Younger

Figure 2.54: Boxplot of SF36 Physical functioning by age Figure 2.55: Boxplot of SF36 Role functioning/physical by age

SF36 Role functioning/emotional SF36 Energy/Fatigue 100 80 80 60 60 40 40 20 20 0 0

Older Younger Older Younger

Figure 2.56: Boxplot of SF36 Role functioning/emotional Figure 2.57: Boxplot of SF36 Energy/fatigue by by age by age

SF36 Emotional well-being SF36 Social functioning 100 100 90 80 80 60 70 60 40 50 20 40 30 0

Older Younger Older Younger

Figure 2.58: Boxplot of SF36 Emotional well-being by age Figure 2.59: Boxplot of SF36 Social functioning by age

Lung Cancer 2018 Australian PEEK Study 73 Section 2

SF36 Pain SF36 General health 100 100 80 80 60 60 40 40 20 20 0

Older Younger Older Younger

Figure 2.60: Boxplot of SF36 Pain by age Figure 2.61: Boxplot of SF36 General health by age

SF36 Health change 100 80 60 40 20 0

Older Younger

Figure 2.62: Boxplot of SF36 Health change by age

Lung Cancer 2018 Australian PEEK Study 74 Section 2 Comparisons of SF36 scales by location assumptions for normality and variance were met (Table 2.24), or when assumptions for normality and Comparisons of SF36 scales were made by location. variance were not met, a Wilcoxon rank sum test with The location of participants was evaluated by postcode continuity correction was used (Table 2.25). using the Australian Statistical Geography Maps (ASGS) Remoteness areas accessed from DoctorConnect No significant differences were observed between (doctorconnect.gov.au), those living in a metropolitan those that live in metropolitan areas and those that area (N=65, 81.25%) were compared to those living in live in regional or remote areas for any of the SF36 regional or remote areas (N= 15, 18.75%). Boxplots of scales. each SF36 scale by location are displayed in Figures 2.63-2.71. A two-sample t-test was used when

Table 2.24: Summary statistics and two sample t-test SF36 scales by location

SF36 Scale Group Count Percent Mean SD t dF p

Metropolitan 65 81.25 43.38 19.35 0.07 78 0.9478 Energy/Fatigue Regional 15 18.75 43.00 24.91 Metropolitan 65 81.25 46.62 22.20 0.39 78 0.6948 General health Regional 15 18.75 44.00 27.20 Table 2.25: Summary statistics Wilcoxon rank sum test with continuity correction SF36 scales by location

SF36 Scale Group Count Percent Median IQR W p

Metropolitan 65 81.25 65.00 45.00 628.00 0.0835 Physical functioning Regional 15 18.75 55.00 62.50 Metropolitan 65 81.25 50.00 100.00 533.50 0.5555 Role functioning/physical Regional 15 18.75 25.00 87.50 Role Metropolitan 65 81.25 66.67 100.00 599.50 0.1416 functioning/emotional Regional 15 18.75 33.33 83.33 Metropolitan 65 81.25 64.00 24.00 474.50 0.8770 Emotional well-being Regional 15 18.75 60.00 26.00 Metropolitan 65 81.25 62.50 37.50 582.00 0.2415 Social functioning Regional 15 18.75 50.00 37.50 Metropolitan 65 81.25 67.50 45.00 557.50 0.3885 Pain Regional 15 18.75 57.50 56.25 Metropolitan 65 81.25 50.00 25.00 455.00 0.6840 Health change Regional 15 18.75 50.00 62.50

Lung Cancer 2018 Australian PEEK Study 75 Section 2

SF36 Physical functioning SF36 Role functioning/physical 100 100 80 80 60 60 40 40 20 20 0 0

Metropolitan Regional Metropolitan Regional

Figure 2.63: Boxplot of SF36 Physical functioning by Figure 2.64: Boxplot of SF36 Role functioning/physical by location location

SF36 Role functioning/emotional SF36 Energy/Fatigue 100 80 80 60 60 40 40 20 20 0 0

Metropolitan Regional Metropolitan Regional

Figure 2.65: Boxplot of SF36 Role function/emotional by Figure 2.66: Boxplot of SF36 Energy/fatigue by location location

SF36 Emotional well-being SF36 Social functioning 100 100 90 80 80 60 70 60 40 50 20 40 30 0

Metropolitan Regional Metropolitan Regional

Figure 2.67: Boxplot of SF36 Emotional well-being by Figure 2.68: Boxplot of SF36 Social functioning by location location

Lung Cancer 2018 Australian PEEK Study 76 Section 2

SF36 Pain SF36 General health 100 100 80 80 60 60 40 40 20 20 0

Metropolitan Regional Metropolitan Regional

Figure 2.69: Boxplot of SF36 Pain by location Figure 2.70: Boxplot of SF36 General health by eye location

SF36 Health change 100 80 60 40 20 0

Metropolitan Regional

Figure 2.71: Boxplot of SF36 Health change by location

Lung Cancer 2018 Australian PEEK Study 77 Section 2 Comparisons of SF36 scales by education functioning” was significantly higher for those with a university qualifications (Median = 75.00, IQR =37.50) Comparisons of SF36 scales were made by education. compared to those with trade or high school Education status, was defined as those with university qualifications (Median = 55.00, IQR = 36.25) degree (N= 40, 50.00%) and those with trade or high ,W=573.50, p=0.0292]. school qualifications (N=40, 50.00%). Boxplots of each SF36 scale by education are displayed in Figures 2.72- The “SF36 physical functioning”, median score for 2.80. A two-sample t-test was used when assumptions participants with university qualifications were in for normality and variance were met (Table 2.26), or the second highest quintile indicating good physical when assumptions for normality and variance were not functioning. These scores were significantly higher met, a Wilcoxon rank sum test with continuity compared to participants with trade or high school correction was used (Table 2.27). qualifications with median scores in the middle of the scale, indicating moderate physical functioning. A Wilcoxon rank sum test with continuity correction indicated that the median score for the “SF36 physical

Table 2.26: Summary statistics and two sample t-test SF36 scales by education

SF36 Scale Group Count Percent Mean SD t dF P

Trade or high school 40 50.00 39.38 19.09 -1.76 78 0.0832 Energy/Fatigue University 40 50.00 47.25 21.00 Table 2.27: Summary statistics Wilcoxon rank sum test with continuity correction SF36 scales by education

SF36 Scale Group Count Percent Median IQR WP

Trade or high school 40 50.00 55.00 36.25 573.50 0.0292* Physical functioning University 40 50.00 75.00 37.50 Trade or high school 40 50.00 25.00 75.00 634.00 0.0942 Role functioning/physical University 40 50.00 75.00 100.00 Role Trade or high school 40 50.00 33.33 100.00 690.00 0.2598 functioning/emotional University 40 50.00 66.67 66.67 Trade or high school 40 50.00 60.00 28.00 734.00 0.5266 Emotional well-being University 40 50.00 64.00 24.00 Trade or high school 40 50.00 62.50 37.50 679.50 0.2431 Social functioning University 40 50.00 62.50 40.63 Trade or high school 40 50.00 67.50 37.50 659.00 0.1735 Pain University 40 50.00 77.50 45.00 Trade or high school 40 50.00 37.50 36.25 657.00 0.1691 General health University 40 50.00 47.50 35.00 Trade or high school 40 50.00 50.00 50.00 806.50 0.9525 Health change University 40 50.00 50.00 50.00 * Statistically significant at p<0.05

Lung Cancer 2018 Australian PEEK Study 78 Section 2

SF36 Physical functioning SF36 Role functioning/physical 100 100 80 80 60 60 40 40 20 20 0 0

School University School University

Figure 2.72: Boxplot of SF36 Physical functioning by Figure 2.73: Boxplot of SF36 Role functional/physical by education education

SF36 Role functioning/emotional SF36 Energy/Fatigue 100 80 80 60 60 40 40 20 20 0 0

School University School University

Figure 2.74: Boxplot of SF36 Role functional/emotional by Figure 2.75: Boxplot of SF36 Energy/fatigue by education education

SF36 Emotional well-being SF36 Social functioning 100 100 90 80 80 60 70 60 40 50 20 40 30 0

School University School University

Figure 2.76: Boxplot of SF36 Emotional well-being by Figure 2.77: Boxplot of SF36 Social functioning by education education

Lung Cancer 2018 Australian PEEK Study 79 Section 2

SF36 Pain SF36 General health 100 100 80 80 60 60 40 40 20 20 0

School University School University

Figure 2.78: Boxplot of SF36 Pain by education Figure 2.79: Boxplot of SF36 General health by education

SF36 Health change 100 80 60 40 20 0

School University

Figure 2.80: Boxplot of SF36 Health change by education

Lung Cancer 2018 Australian PEEK Study 80 Section 2 Comparisons of SF36 scales by Socio-Economic Indexes For Areas (SEIFA) The “SF36 Energy/fatigue” mean score for participants that lived in an area with a high SEIFA Comparisons of SF36 scales were made by Socio- was in the in the middle of the scale indicating economic Indexes for Areas (SEIFA), SEIFA scores range moderate energy/fatigue. These scores were from 1 to 10, a higher score denotes a higher level of significantly higher compared to the mean score for advantage. Those with a higher SEIFA score of 7-10, participants that lived in an area with a low SEIFA high SEIFA (N=50, 62.50%) compared to those with a was in the second lowest quintile indicating poor mid to low SEIFA score of 1-6, mid-low SEIFA (N=30, energy/fatigue. 37.50%). The “SF36 physical functioning” median score for Boxplots of each SF36 scale by SEIFA are displayed in participants that lived in an area with a high SEIFA Figures 2.81-2.89. A two-sample t-test was used when was in the second highest quintile indicating good assumptions for normality and variance were met physical functioning. These scores were (Table 2.28), or when assumptions for normality and significantly higher compared to participants that variance were not met, a Wilcoxon rank sum test with lived in an area with a low SEIFA with a median continuity correction was used (Table 2.29). score in the second lowest quintile, indicating poor physical functioning. A two sample t-test indicated that the mean score for the “SF36 Energy/fatigue” was significantly higher for The “SF36 Role functioning/physical” median score those living in an area with a higher SEIFA (mean for participants that lived in an area with a high =48.50, SD = 18.47) compared to those with those that SEIFA was in the in the middle of the scale, lived in an area with a mid-low SEIFA (mean = 34.67, SD indicating moderate role functioning due to = 20.63) [t(78) = 3.10, p=0.0027]. physical health. These scores were significantly higher compared to and the median score for Wilcoxon rank sum tests with continuity correction participants that lived in an area with a low SEIFA indicated that the median score for the “SF36 Physical which was in the lowest quintile indicating very functioning” was significantly higher for those that poor role functioning due to physical health. lived in an area with a high SEIFA (median = 75.00, IQR =28.75) compared to those that lived in an area with a The “SF36 Social functioning”, and “SF36 Pain”, mid-low SEIFA (Median = 37.50, IQR = 53.75) median scores for participants that lived in an area [W=1183.50, p<0.0001]; the median score for the with a high SEIFA were in the second highest “SF36 Role functioning/physical” was significantly quintile indicating good social functioning, and less higher for those that lived in an area with a high SEIFA pain. These scores were significantly higher (median = 50.00, IQR =100.00) compared to those that compared to participants that lived in an area with lived in an area with a mid-low SEIFA (median = 0.00, a low SEIFA with median scores in the middle of the IQR = 75.00) [W=984.00, p=0.0147]; the median score scale, indicating moderate social functioning, and for the “SF36 Social functioning” was significantly moderate pain. higher for those that lived in an area with a high SEIFA (median = 75.00, IQR =46.88) compared to those that The “SF36 General health” median score for lived in an area with a mid-low SEIFA (median = 50.00, participants that lived in an area with a high SEIFA IQR = 25.00) [W=989.50, p=0.0164]; the median score was in the middle of the scale, indicating moderate for the “SF36 Pain” was significantly higher for those general health. These scores were significantly that lived in an area with a high SEIFA (Median = 77.50, higher compared to the median score for IQR =30.00) compared to those that lived in an area participants that lived in an area with a low SEIFA with a mid-low SEIFA (Median = 50.00, IQR = 52.50) which was in the second lowest quintile indicating [W=1015.00, p=0.0081]; the median score for the poor general health “SF36 General health” was significantly higher for those that lived in an area with a high SEIFA (Median = . 55.00, IQR =30.00) compared to those that lived in an area with a mid-low SEIFA (Median = 25.00, IQR = 28.75) [W=1128.00, p=0.0002].

Lung Cancer 2018 Australian PEEK Study 81 Section 2 Table 2.28: Summary statistics and two sample t-test SF36 scales by SEIFA

SF36 Scale Group Count Percent Mean SD t dF p

High SEIFA 50 62.50 48.50 18.47 3.10 78 0.0027* Energy/Fatigue Mid - Low SEIFA 30 37.50 34.67 20.63

* Statistically significant at p<0.05

Table 2.29: Summary statistics Wilcoxon rank sum test with continuity correction SF36 scales by SEIFA

SF36 Scale Group Count Percent Median IQR W p

High SEIFA 50 62.50 75.00 28.75 1183.50 <0.0001* Physical functioning Mid - Low SEIFA 30 37.50 37.50 53.75 High SEIFA 50 62.50 50.00 100.00 984.00 0.0147* Role functioning/physical Mid - Low SEIFA 30 37.50 0.00 75.00 Role High SEIFA 50 62.50 100.00 91.67 884.50 0.1544 functioning/emotional Mid - Low SEIFA 30 37.50 50.00 100.00 High SEIFA 50 62.50 62.00 28.00 716.00 0.7380 Emotional well-being Mid - Low SEIFA 30 37.50 62.00 23.00 High SEIFA 50 62.50 75.00 46.88 989.50 0.0164* Social functioning Mid - Low SEIFA 30 37.50 50.00 25.00 High SEIFA 50 62.50 77.50 30.00 1015.00 0.0081* Pain Mid - Low SEIFA 30 37.50 50.00 52.50 High SEIFA 50 62.50 55.00 30.00 1128.00 0.0002* General health Mid - Low SEIFA 30 37.50 25.00 28.75 High SEIFA 50 62.50 50.00 50.00 842.00 0.3481 Health change Mid - Low SEIFA 30 37.50 37.50 43.75

* Statistically significant at p<0.05

SF36 Physical functioning SF36 Role functioning/physical 100 100 80 80 60 60 40 40 20 20 0 0

High SEIFA Mid – Low SEIFA High SEIFA Mid – Low SEIFA

Figure 2.81: Boxplot of SF36 Physical functioning by SEIFA Figure 2.82: Boxplot of SF36 Role functioning/physical by SEIFA

Lung Cancer 2018 Australian PEEK Study 82 Section 2

SF36 Role functioning/emotional SF36 Energy/Fatigue 100 80 80 60 60 40 40 20 20 0 0

High SEIFA Mid – Low SEIFA High SEIFA Mid – Low SIEFA

Figure 2.83: Boxplot of SF36 Role functioning/emotional Figure 2.84: Boxplot of SF36 Energy/fatigue by SEIFA by SEIFA

SF36 Emotional well-being SF36 Social functioning 100 100 90 80 80 60 70 60 40 50 20 40 30 0

High SEIFA Mid – Low SEIFA High SEIFA Mid – Low SEIFA

Figure 2.85: Boxplot of SF36 Emotional well-being by Figure 2.86: Boxplot of SF36 Social functioning by SEIFA SEIFA

SF36 Pain SF36 General health 100 100 80 80 60 60 40 40 20 20 0

High SEIFA Mid – Low SEIFA High SEIFA Mid – Low SEIFA

Figure 2.87: Boxplot of SF36 Pain by SEIFA Figure 2.88: Boxplot of SF36 General health by SEIFA

Lung Cancer 2018 Australian PEEK Study 83 Section 2

SF36 Health change 100 80 60 40 20 0

High SEIFA Mid – Low SEIFA

Figure 2.89: Boxplot of SF36 Health change by SEIFA

Lung Cancer 2018 Australian PEEK Study 84 Section 3 Section 3 Symptoms and diagnosis

Lung Cancer 2018 Australian PEEK Study Section 3

Section 3: Experience of symptoms and diagnosis

Experience of symptoms before diagnosis

Symptoms leading to diagnosis

Diagnostic pathway

Costs at diagnosis

Understanding of disease at diagnosis

86 Lung Cancer 2018 Australian PEEK Study Section 3 Support at diagnosis

Diagnostic tests

Conversations about genetic and biomarker tests

Experience of genetic tests

Lung cancer biomarkers Participants were asked if they had any particular lung cancer biomarkers, the most common response was “I’m not sure” (N=38, 47.50%). Forty-two participants (52.50%) identified they had biomarkers; 22 had ALK (27.50%), 17 had EGFR (21.25%) and 3 had ROS1 (3.75%). No participants identified more than one biomarker. Of the participants that described having a particular biomarker, seven had responded a question about genetic testing/biomarkers that “I have not had this test but would like to” and six of these had responded that “No one has ever spoken to me about this type of test”.

Understanding of prognosis Participants were asked to describe what their current understanding of their prognosis was. There were two main themes including understanding prognosis in relation to survival rates and/or statistics (n=17, 21.25%) and that their tumour has been removed and/or there is no evidence of disease (n=17, 21.25%). There were 15 participants (18.75%) that did not know their prognosis and eight participants (10.00%) that understood that their cancer is terminal and incurable. Other themes included participants understanding of prognosis is that treatment is working, but they do not know their prognosis (n=7, 8.75%), treatment is working (good prognosis) (n=6, 7.50%) and treatment may be working now, but it is likely that it will stop working at some stage (n=6, 7.50%)

87 Lung Cancer 2018 Australian PEEK Study Section 3 Experience of symptoms before diagnosis great”. Table 3.1 describes symptoms and quality of life due to symptoms. Participants were asked to recall the symptoms that they noticed in themselves that led them to pursue The most common symptoms were back and/or further investigation with a clinician. This question shoulder pain (N=35, 43.75%), tired/lower energy was asked both in an online questionnaire and as part levels than usual (N=31, 38.75%), and shortness of of the structured interview. Responses from both breath (N=29, 36.25%). The worst quality of life was sources of information were cross-validated to experienced with recurring bronchitis or pneumonia compile these results. (average = 2.81) in the life was distressing to life was a little distressing range. Back and shoulder pain had The first question was in the online questionnaire and an average quality of life of 4.14 in the life was asked participants to recall all of the symptoms that average to life was good range, tired/lower energy they experienced and their quality of life while levels than usual (average = 3.94) and shortness of experiencing those symptoms. Quality of life was breath (4.38) were in the Life was a little distressing to rated on a Likert scale from one to seven, where one life is average range. is “Life was very distressing” and seven is “Life was

Table 3.1: Symptoms experienced and mean QoL Quality of life Symptom Number Percent Range Mean Shoulder or back pain 35 43.75 1 to 7 4.14 Tired/lower energy levels than usual 31 38.75 1 to 7 3.94 Shortness of breath and wheezing 29 36.25 1 to 7 4.38 Coughing or spitting up blood? 28 35.00 1 to 6 3.43 New cough that does not go away 25 31.25 1 to 6 3.84 Recurring bronchitis or pneumonia 16 20.00 1 to 5 2.81 Chest pain 12 15.00 1 to 7 4.08 Hoarseness (scratchy voice) 12 15.00 1 to 5 3.33 Unexplained weight loss 8 10.00 1 to 7 4.50 Loss of appetite 7 8.75 2 to 7 3.86

Lung Cancer 2018 Australian PEEK Study 88 Section 3

5.00 4.50 4.00 3.50 3.00 2.50 2.00 1.50

Mean quality of life quality Mean 1.00 0.50 0.00

Tir ed

Chest painHoarsenessWeight loss Lost appetite

Shoulder/back pain Shortness of breath New persistentBronchitis/pneumonia cough Coughing/spitting blood Figure 3.1: Symptoms and mean quality of life scores

Lung Cancer 2018 Australian PEEK Study 89 Section 3

Symptoms leading to diagnosis Yes, certainly. The very first, I guess, obvious symptom of lung cancer was like…I want to use the In the online questionnaire, participants were asked word wheezing, but it just doesn't quite describe it. to select every symptom that they had at diagnosis. In As I was breathing…You know if you had, say, a the structured interview, participants were asked to blocked nose and it makes a noise as you breathe in describe the symptoms that actually led to their and out of your nose? It was like that, but it was diagnosis. The most common symptom leading to coming out of my chest… I got the ladder out, got up diagnosis was breathing difficulties, including the ladder, got the painting down, got down the shortness of breath (n=26, 32.50%). There were 19 ladder. I was really out of breath…When I got back to participants (23.75%) who described having a the ground, I was out of breath. At this stage…I was persistent cough and 11 participants (13.75%) who reasonably fit so that was a bit worrying. Participant described having a pain in their back. Other symptoms 23 leading to diagnosis included chest pain (n=8, 10.00%) and coughing phlegm or blood (n=7, 8.75%). It was only I was out of breath. I'd walk the dog every morning down the beach, and when I come up In relation to sub-group variations, participants with the steps up to the road, I was just getting out of stage I and II cancer (5.88%) reported having a breath. That was it, just to be out of breath which I persistent cough less frequently than the general didn't feel otherwise. It was unusual, it had just been population (23.75%). Older participants (19.44%) happening for a couple of weeks. When I exerted reported breathing difficulties and shortness of breath myself I'd just go out of breath. I noticed it only when less frequently than the general population (32.50%) I went upstairs or do something quite energetic. while younger participants described this more Participant 56 frequently (43.18%). Participants with other metastases (25.00%) reported having pain in their Participant describes persistent cough back more frequently than the general population (13.75%), while those from regional or remote areas The dry coughs, it was persistent dry coughs that I described this less frequently (0.00%). Participants picked up what was sort of May time of the year. I with stage I to II cancer (20.59%), those with more thought it was bronchitis and it kept going. I went to pain (21.88%) and those from regional or remote see a doctor to see if I could get antibiotics. Maybe it areas (20.00%) reported having general chest pain was an infection because I've had experience with more frequently than the general population bronchitis before and none of those antibiotics (10.00%). Finally, participants from regional or remote worked. Participant 29 areas (20.00%) reported coughing up blood or phlegm more frequently than the general population (8.75%). A couple of days after that I just developed a little cough, on the right-hand side, below where that rib Participant describes breathing difficulties/wheezing was very sore. I thought, that's because I'm not or shortness of breath breathing deeply enough on that side because I knew it was very painful. I was taking Panadol because we I couldn't breathe. I actually I actually thought I was were on holiday. I was just trying to make sure I did having a heart attack couldn't breathe. I was deep breathing exercises. When I got home from the accepting a delivery at the time … and I just held holidays, we walk regularly, and once I started onto my chest I said I can't breathe I can't breathe walking that little cough went away. Then, we went and went over to luckily and I used to work next door on a road trip holiday where I wasn't doing the to a doctor doctor's surgery. So I went over to him walking, and the cough came back. I thought, and I said I'm having really difficulty breathing and "That's a bit strange." When we got back from that he had a look checked my chest…It's not a heart road trip, it was about a month since the fall and the attack. And he diagnosed me with pleurisy at that cough had gotten quite nasty. Participant 47 time. At first it was pleurisy and then it was pleurisy because I well I did have symptoms of pleurisy as well. Participant 3

Lung Cancer 2018 Australian PEEK Study 90 Section 3 ...I was coughing all the time. I'd had the cough for Participant describes general chest pain about six months and my work partner said, "You got to go get that checked out." I'm like, "Yes, I will I didn't have any symptoms as such. I did have a pain do one day, when I get time." It just so happened one in my chest that I've actually been into hospital night I had time to make an appointment. I saw the about. I'd actually just returned on a flight from doctor was open. I popped in and made an LOCATION and I was about a bit short of breath. appointment for the next night. Participant 71 Then I had a pain in my chest and so I went to the hospital on arrival back town. They just did bloods Participant describes having pain in their back and said that I hadn't had a heart attack and gave me a scoot for anti acids. Probably then about three What happened was I just went to bed one night and months later I mentioned it to the GP that I still had I woke up in the middle of the night with a severe the same sort of pain in my chest that I also put pain in my back really, in my left side part of my down to a bit of anxiety and she tended to agree back. I had a bit of a twinge in that area the first few with me. Then it wasn't until maybe three months days and I thought I pulled a muscle working too later that I saw the head GP speaking of that's in hard. Participant 24 practice and then she met with him and he sent me for a chest X-ray. Participant 5 Basically, I was getting back pain. Started off sort of mild and it would come and go and got progressively I was in the city with a friend…on New Year's day worse over a period of about six months. Then got to having coffee with an old friend from work and I get the point where I was on painkillers every day and this pain in my chest. It's above my breast and it's my having a hot water bottle on it every night. left breast, usually, it went. It always went after a Participant 46 few minutes. It wasn't going. I was feeling quite sick. Then my friend wanted to stay with me, I said, "No It's hard because I never would [sic] have thought it I'll be fine." Because that's what I always say. I was lung cancer because what took me to the walked down to get the bus to get home. I'm sitting hospital, I guess, was a pain in my back, like in my at the bus stop thinking, “I feel so terrible. I felt spine. It was just so painful, but I just kept it between absolutely terrible. I got the bus to the hospital. my head. It's so painful. One morning, I couldn't get Which was only one bus stop. Believe me, I couldn't out of bed. I just ended up going to the hospital in even walk that far. I went in. As soon as you say your private hospital here in Melbourne and just said you've got pain in your chest they rush you in right to them, ''I can't take this pain anymore.'' That's away. It wasn't my heart. I knew it wasn't my heart where they did my scans, and they found something because it wasn't even anywhere near my heart the there. Participant 58 pain. Then they sent me for an X-ray. The doctor came back and he said that there was a mass on my lung. I'm not stupid, soon as she said that I knew what it was. When they did tell me it was cancer I'd been expecting it because of what she said. Participant 15

I thought I was having a heart attack because I get this chest pain in the chest, I get this back pain and it could get really bad when I drive. Participant 21

Lung Cancer 2018 Australian PEEK Study 91 Section 3 Table 3.2: Symptoms leading to diagnosis All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes breathing 26 32.50 6 35.29 4 23.53 16 34.78 10 29.41 difficulties/wheezing or shortness of breath Participant describes persistent cough 19 23.75 1 5.88 4 23.53 14 30.43 5 14.71

Participant describes having pain in their back 11 13.75 1 5.88 2 11.76 8 17.39 3 8.82 Participant describes general chest pain 8 10.00 4 23.53 3 17.65 1 2.17 7 20.59 Participant describes coughing up phlegm or 7 8.75 1 5.88 2 11.76 4 8.70 3 8.82 blood Participant describes being not noticing any 6 7.50 2 11.76 2 11.76 2 4.35 4 11.76 symptoms before diagnosis Participant describes having pain around the ribs 6 7.50 0 0.00 1 5.88 5 10.87 1 2.94

Participant describes having pain around 6 7.50 1 5.88 0 0.00 5 10.87 1 2.94 shoulders Participant describes being very tired 6 7.50 1 5.88 2 11.76 3 6.52 3 8.82

Participant describes recurring chest 5 6.25 2 11.76 2 11.76 1 2.17 4 11.76 infections/bronchitis

All participants Stage I and II Stage III Stage IV Stage I to III

Participant describes having pain around 6 7.50 1 5.88 0 0.00 5 10.87 1 2.94 shoulders Participant describes being very tired 6 7.50 1 5.88 2 11.76 3 6.52 3 8.82

Participant describes recurring chest 5 6.25 2 11.76 2 11.76 1 2.17 4 11.76 infections/bronchitis

Lung Cancer 2018 Australian PEEK Study 92 Section 3 Table 3.2: Symptoms leading to diagnosis (continued)

All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes breathing 26 32.50 15 31.25 11 34.38 7 19.44 19 43.18 difficulties/wheezing or shortness of breath Participant describes persistent cough 19 23.75 12 25.00 7 21.88 10 27.78 9 20.45

Participant describes having pain in their back 11 13.75 6 12.50 5 15.63 3 8.33 8 18.18 Participant describes general chest pain 8 10.00 1 2.08 7 21.88 3 8.33 5 11.36 Participant describes coughing up phlegm or 7 8.75 4 8.33 3 9.38 1 2.78 6 13.64 blood Participant describes being not noticing any 6 7.50 5 10.42 1 3.13 4 11.11 2 4.55 symptoms before diagnosis Participant describes having pain around the ribs 6 7.50 3 6.25 3 9.38 2 5.56 4 9.09

Participant describes having pain around 6 7.50 5 10.42 1 3.13 3 8.33 3 6.82 shoulders Participant describes being very tired 6 7.50 4 8.33 2 6.25 1 2.78 5 11.36

Participant describes recurring chest 5 6.25 3 6.25 2 6.25 2 5.56 3 6.82 infections/bronchitis

Symptoms leading to diagnosis All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes breathing difficulties/wheezing or shortness of 26 32.50 22 33.85 4 26.67 12 30.00 14 35.00 16 32.00 10 33.33 breath Participant describes persistent cough 19 23.75 15 23.08 4 26.67 9 22.50 10 25.00 12 24.00 7 23.33

Participant describes having pain in 11 13.75 11 16.92 0 0.00 5 12.50 6 15.00 9 18.00 2 6.67 their back Participant describes general chest 8 10.00 5 7.69 3 20.00 5 12.50 3 7.50 0 0.00 8 26.67 pain Participant describes coughing up 7 8.75 4 6.15 3 20.00 4 10.00 3 7.50 2 4.00 5 16.67 phlegm or blood Participant describes being not noticing 6 7.50 6 9.23 0 0.00 3 7.50 3 7.50 4 8.00 2 6.67 any symptoms before diagnosis Participant describes having pain 6 7.50 6 9.23 0 0.00 1 2.50 5 12.50 4 8.00 2 6.67 around the ribs Participant describes having pain 6 7.50 5 7.69 1 6.67 5 12.50 1 2.50 4 8.00 2 6.67 around shoulders Participant describes being very tired 6 7.50 5 7.69 1 6.67 1 2.50 5 12.50 4 8.00 2 6.67 Participant describes recurring chest 5 6.25 5 7.69 0 0.00 2 5.00 3 7.50 4 8.00 1 3.33 infections/bronchitis

Lung Cancer 2018 Australian PEEK Study 93 Section 3

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00

Pain in back No symptoms Pain near ribs Persistent cough Feeling very tired Chest pain (general) Pain around shoulders Coughing phlegm or blood Chest infections/bronchitis

Breathing difficulties/shortness of breath Figure 3.2: Symptoms leading to diagnosis (Percentage of all participants)

Diagnostic pathway Eleven participants (13.75%) had no symptoms before Participants noted in the questionnaire the diagnosis. More than half of the participants were approximate date when they first noticed symptoms diagnosed within 6 months of noticing symptoms and then the approximate date when they were (N=48, 60.00%), 14 participants (17.50%) were diagnosed. From the information reported, from diagnosed between 6 and 12 months after noticing those participants were an approximate time lapse symptoms, and seven participants (8.75%) were could be made (N=80), the range of time between diagnosed after a year. symptoms and diagnosis was from less than a week to 42 months. 25.00 Table 3.3: Time from symptoms to diagnosis 20.00 Time from symptoms to Count Percent diagnosis (N=80) 15.00 No symptoms 11 13.75 Percent

< 1 month 12 15.00 10.00 1 month - < 3 months 19 23.75

3 months - < 6 months 17 21.25 5.00 6 months - < 12 months 14 17.50

12 months - < 18 months 3 3.75 0.00 No symptms < 1 month 1 month - < 3 3 months - < 6 6 months - < 12 12 months - < 18 18 months or more 18 months or more 4 5.00 months months months months Figure 3.3: Time from symptoms to diagnosis Lung Cancer 2018 Australian PEEK Study 94 Section 3 Costs at diagnosis In the questionnaire, participants were asked to The participants were then asked on the online estimate the amount of out of pocket expenses they questionnaire if the amount they spent was a burden, had for diagnostic tests and medical consultations. for almost half of the participants (N= 39, 48.75%), it Twenty-seven participants (33.75%) had no out of was no burden at all, 12 (15.00%) participants found it pocket expenses, 19 participants (23.75%) spent less extremely or moderately significant burden, and 29 than $500, 7 participants (8.75%) spent between $501 (36.25%) participants found it a somewhat or slightly and $1000, 14 participants (17.50%) spent more than significant burden. $1000, the most spent was $3500. The remaining 13 participants were unable to recall how much they spent (16.25%).

Table 3.4: Costs of diagnosis Table 3.5: Cost of diagnosis – level of burden Count Cost ($AUD) Count (n=80) Percent Cost a significant burden Percent (N=80)

0 27 33.75 Not at all significant 39 48.75 1-100 1 1.25 Slightly significant 18 22.50 101-500 18 22.50 Moderately significant 11 13.75 501-1000 7 8.75 Somewhat significant 11 13.75 >1000 14 17.50 Extremely significant 1 1.25 Not sure 13 16.25

40.00 60.00

35.00 50.00 30.00 40.00 25.00

20.00 30.00 Percent Percent 15.00 20.00 10.00 10.00 5.00

0.00 0.00 0 1-100 101-500 501-1000 >1000 Not sure Not at all Slightly Moderately Somewhat Extremely Amount spend $AUD significant significant significant significant significant

Figure 3.4: Costs of diagnosis Figure 3.5: Cost of diagnosis – level of burden

Lung Cancer 2018 Australian PEEK Study 95 Section 3 Understanding of disease at diagnosis Participant describes thinking that lung cancer was only related to smoking at diagnosis Participants were asked how much they knew about lung cancer at diagnosis. There were 58 participants Nothing. I thought it was a smoker's disease. I (72.50%) that described knowing nothing or very little thought of all the cancers I would ever have got, that about lung cancer at diagnosis and this was the most would be the…If you asked me, what cancers would common theme. There were 17 participants (21.25%) you have got or, you would likely to get, I wouldn't noting that they thought lung cancer was only related even have listed it. Because my understanding was, to smoking when they were diagnosed and 12 that unless you smoked, you didn't get lung cancer. participants (15.00%) that described their Participant 19 understanding was that lung cancer is associated with a poor prognosis or that it is a terminal condition. I knew nothing about it. I knew nothing about…I In relation to sub-group variations, participants with thought that lung cancer-- That people stage I and II lung cancer (29.42%) reported predominantly have lung cancer if they'd been understanding was that lung cancer is associated with smokers. I've never been a smoker. I didn't think that a poor prognosis or that it is a terminal condition, you had to be a smoker. I didn't know anything more frequently than the general population about the statistics. I didn't know how unfortunate a (15.00%). Participants in regional and remote areas diagnosis is. I certainly didn't know it was the biggest (86.67%) reported knowing very little or nothing cancer killer. I didn't understand how much stigma about lung cancer, more frequently than the general there was against people with lung cancer. I didn't population (72.50%). Participants in regional and understand any of that because it just hadn't been remote areas (46.67%) and those with brain part of my reality. Participant 22 metastases (36.36%) reported thinking that lung cancer was only related to smoking, more frequently Nothing really. I just assumed that people who than the general population (21.25%), while those smoke got lung cancer, but I've never smoked. with other metastases reported this less frequently Participant 50 (8.33%). Virtually nothing. To be honest, I had always Participant describes knowing nothing or very little associated lung cancer with people who smoked, and at all about lung cancer at diagnosis I never realized that you could get lung cancer if you had never smoked, which is in my case, I've never Nothing at all. Absolutely nothing. To me, I was a 50- smoked. Participant 60 year old that had no previous- I've not been sick, I’ve only been in hospital with having children and I Participant describes their understanding was that haven't been hospitalized for anything. Participant lung cancer is associated with a poor prognosis or 36 that it is a terminal condition

Very little, very little because it’s just not a Not a lot. I just had a vision of it was a death promotable cancer, I suppose. [laughs] I was sentence. It was terminal because it's not a good shocked. I didn’t know very much about lung cancer cancer to have. That was about all I knew about it, to apart from only very grim information, adverts on be honest. Participant 1 smoking and things. You see, that was really the only knowledge I had about lung cancer. Definitely not All I knew was that I'm going to die. Straightaway being advertised like your breast cancers, ovarian when lung cancer is talked about, it's like going to cancer, and more common cancers. Yes, I didn't know die. That was my understanding of it and that was it. too much about it at all. Participant 44 Participant 9

Zero. It just totally threw us because this is as you In the early stage, virtually nothing. I knew that if can imagine the last thing we were expecting. I'm in you got lung cancer you mostly died. I knew that Yul good health. Participant 57 Brenner had died from lung cancer. That was all I knew. I assumed that I was going to die. Participant 23

Lung Cancer 2018 Australian PEEK Study 96 Section 3 I knew lung cancer was bad shit. I know it's she died and back then, I just thought that lung aggressive, and it's bad. That's as much as I know. I cancer was lung cancer, I didn't realize that there know that people don't often stick around very long were all different sorts…I just had no idea. I just with this sort of stuff. Participant 42 knew she had lung cancer and that was that. But I guess it's changed a lot in the last seven years, so Participant describes knowing about lung cancer everybody knows a lot more... Participant 24 through a family member or friends having it I had unfortunately this great prevalence in my I was quite frightened because NAME had the lung family and both my parents had passed away from cancer and I only knew as much as NAME had, he did cancer and also I had previously had cancer, and chemo. He had surgery before chemo so then I was when I was 17, a different kind. I did know. I was just hoping maybe it's just something that I can have aware. Not lung cancer per se, but the whole cancer surgery, take it out, get rid of it and everything spectrum and treatment spectrum, I was quite aware would be all right again, but it wasn't that way in the of, so it wasn't kind of…from my point of view, it was end. Participant 16 more, you know what you're in for... Participant 62

The funny thing is is that my mum passed away of lung cancer seven years before me. She was 67 when

Table 3.6: Understanding of disease at diagnosis Understanding of disease at diagnosis All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes knowing nothing or very 58 72.50 13 76.47 14 82.35 31 67.39 27 79.41 little at all about lung cancer at diagnosis Participant describes thinking that lung cancer was only related to smoking at diagnosis 17 21.25 2 11.76 5 29.41 10 21.74 7 20.59 Participant describes their understanding was that lung cancer is associated with a poor prognosis or 12 15.00 5 29.41 2 11.76 5 10.87 7 20.59 that it is a terminal condition Participant describes knowing about lung cancer 7 8.75 2 11.76 1 5.88 4 8.70 3 8.82 through a family member or friends having it Participant describes knowing about cancer from having a professional background in science, 5 6.25 0 0.00 1 5.88 4 8.70 1 2.94 health or medicine

Understanding of disease at diagnosis All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes knowing nothing or very little at all about lung cancer at 58 72.50 14 63.64 17 70.83 27 79.41 31 73.81 27 71.05 diagnosis Participant describes thinking that lung cancer was only related to smoking at 17 21.25 8 36.36 2 8.33 7 20.59 9 21.43 8 21.05 diagnosis Participant describes their understanding was that lung cancer is associated with a 12 15.00 3 13.64 2 8.33 7 20.59 5 11.90 7 18.42 poor prognosis or that it is a terminal condition Participant describes knowing about lung cancer through a family member or friends 7 8.75 2 9.09 2 8.33 3 8.82 3 7.14 4 10.53 having it Participant describes knowing about cancer from having a professional background in 5 6.25 3 13.64 1 4.17 1 2.94 3 7.14 2 5.26 science, health or medicine

Lung Cancer 2018 Australian PEEK Study 97 Section 3 Table 3.6: Understanding of disease at diagnosis (continued) Understanding of disease at diagnosis All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes knowing nothing or very 58 72.50 32 66.67 26 81.25 28 77.78 30 68.18 little at all about lung cancer at diagnosis Participant describes thinking that lung cancer was only related to smoking at diagnosis 17 21.25 8 16.67 9 28.13 7 19.44 10 22.73 Participant describes their understanding was that lung cancer is associated with a poor prognosis or 12 15.00 7 14.58 5 15.63 7 19.44 5 11.36 that it is a terminal condition Participant describes knowing about lung cancer 7 8.75 5 10.42 2 6.25 2 5.56 5 11.36 through a family member or friends having it Participant describes knowing about cancer from having a professional background in science, 5 6.25 5 10.42 0 0.00 2 5.56 3 6.82 health or medicine

Understanding of disease at All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low diagnosis remote school SEIFA n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes knowing nothing or very little at all about lung cancer at 58 72.50 45 69.23 13 86.67 29 72.50 29 72.50 35 70.00 23 76.67 diagnosis Participant describes thinking that lung cancer was only related to smoking at 17 21.25 10 15.38 7 46.67 8 20.00 9 22.50 11 22.00 6 20.00 diagnosis Participant describes their understanding was that lung cancer is 12 15.00 10 15.38 2 13.33 8 20.00 4 10.00 5 10.00 7 23.33 associated with a poor prognosis or that it is a terminal condition Participant describes knowing about lung cancer through a family member 7 8.75 7 10.77 0 0.00 4 10.00 3 7.50 4 8.00 3 10.00 or friends having it Participant describes knowing about cancer from having a professional 5 6.25 5 7.69 0 0.00 0 0.00 5 12.50 5 10.00 0 0.00 background in science, health or medicine

80.00

70.00

60.00

50.00

40.00

30.00

20.00

10.00

0.00 Knowing nothing or very little at all Thinking that lung cancer was only Lung cancer is associated with a poor Knowing about lung cancer through a Knowing about cancer from having a about lung cancer at diagnosis related to smoking at diagnosis prognosis or that it is a terminal family member or friends having it professional backgorund in science, condition health or medicine Figure 3.6: Understanding of disease at diagnosis (Percentage of all participants)

Lung Cancer 2018 Australian PEEK Study 98 Section 3 Support at diagnosis Table 3.7: Support at diagnosis In the questionnaire, participants were asked whether Emotional support at Count Percent they felt supported at the time of diagnosis. There diagnosis (N=80) were 50 participants (62.50%) that indicated that they I/we had enough support 16 20.00 had no support at diagnosis, while 16 participants I/we had some support but (20.00%) noted that they had enough support. An it wasn't enough 14 17.50 additional 14 participants (17.50%) indicated that they I/we had no support 50 62.50 had some support but that it was not enough.

In relation to sub-group variations, those with stage I and II lung cancer responded that they had “no support” (52.94%) less often than the general cohort (62.50%); and those that had stage III lung cancer responded that they had “no support” (76.47%) more often than the general cohort (62.50%). All other subgroups followed similar levels of support to those of the entire cohort (Table 3.8)

Figure 3.7: Support at diagnosis

Table 3.8: Support at diagnosis by subgroup All Distant metastases Support at diagnosis Lung cancer stage participants No distant Distant Stages I and II Stage III Stage IV metastases metastases N=80 N=17 N=17 N=46 N=34 N=46 I/we had enough support 16 (20.00%) 3 (17.65%) 3 (17.65%) 10 (21.74%) 6 (17.65%) 10 (21.74%) I/we had some support but it wasn't enough 14 (17.50%) 5 (29.41%) 1 (5.88%) 8 (17.39%) 6 (17.65%) 8 (17.39%) I/we had no support 50 (62.50%) 9 (52.94%) 13 (76.47%) 28 (60.87%) 22 (64.71%) 28 (60.87%) All Brain metastases Energy/fatigue participants Brain Other distant Better Worse metastases metastases No distant metastases energy/fatigue energy/fatigue N=80 N=22 N=24 N=34 N=42 N=38 I/we had enough support 16 (20.00%) 5 (22.73%) 5 (20.83%) 6 (17.65%) 8 (19.05%) 8 (21.05%) I/we had some support but it wasn't enough 14 (17.50%) 5 (22.73%) 3 (12.50%) 6 (17.65%) 9 (21.43%) 5 (13.16%) I/we had no support 50 (62.50%) 12 (54.55%) 16 (66.67%) 22 (64.71%) 25 (59.52%) 25(65.79%) All Pain Gender Age participants Older (55 and Younger (18 to Less pain More pain Female Male older) 54) N=80 N=48 N=32 N=66 N=14 N=36 N=44 I/we had enough support 16 (20.00%) 11(22.92%) 5 (15.63%) 14 (21.21%) 2 (14.29) 9 (25.00%) 7 (15.91%) I/we had some support but it wasn't enough 14 (17.50%) 8 (16.67%) 6 (18.75%) 10 (15.15%) 4 (28.57%) 6 (16.67%) 8 (18.18%) I/we had no support 50 (62.50%) 29 (60.42%) 21 (65.63%) 42 (63.64%) 8 (57.14%) 21 (58.33%) 29 (65.91%) All participants Location Education SEIFA Regional/ Trade or high Metropolitan Remote school University Higher SEIFA Lower SEIFA N=80 N=65 N=15 N=40 N=40 N=50 N=30 I/we had enough support 16 (20.00%) 14 (21.54%) 2 (13.33%) 6 (15.00%) 10 (25.00%) 10 (20.00%) 6 (20.00%) I/we had some support but it wasn't enough 14 (17.50%) 10 (15.38%) 4 (26.67%) 7 (17.50%) 7 (17.50%) 8 (16.00%) 6 (20.00%) I/we had no support 50 (62.50%) 41 (63.08%) 9 (60.00%) 27 (67.50%) 23 (57.50%) 32 (64.00%) 18 (60.00%)

Lung Cancer 2018 Australian PEEK Study 99 Section 3 Diagnostic tests Participants were asked on the online questionnaire what tests that they had received leading up to their diagnosis with lung cancer. The majority of participants had CT scans (N=75, 93.75%), biopsy (N=69, 86.25%), PET scans (N=59, 73.75%), and chest x-rays (N=54, 67.50%). Participants had between one and five diagnostic tests, most commonly three tests (N=30, 37.50%) or four tests (N=37, 46.25%).

Table 3.9: Diagnostic tests Figure 3.9: Number of diagnostic tests Count Diagnostic tests Percent (N=80) Time from diagnostic tests to diagnosis Diagnostic test used Participants were asked on the online questionnaire about the amount of time from diagnostic test until CT scan 75 93.75 they received a diagnosis. The time ranged from less Biopsy 69 86.25 than one week to 4 months. More than half of the PET scan 59 73.75 participants waited less than one week (N=41, Chest x-ray 54 67.50 51.90%), and the majority waited less than two weeks (N=64, 81.01%). Sputum cytology 5 6.25 MRI 4 5.00 Table 3.10: Time to diagnosis Bronchoscopy 2 2.50 Wait between tests and Count Percent Number of diagnostic tests diagnosis (N=79) 1 5 6.25 Less than 1 week 41 51.90 Between 1 and 2 weeks 23 29.11 2 5 6.25 Between 2 and 3 weeks 10 12.66 3 30 37.50 4 weeks or more 5 6.33 4 37 46.25 5 3 3.75 60.00

50.00 100.00 90.00 80.00 40.00 70.00 60.00 30.00 50.00 Percent

Percent 40.00 20.00 30.00 20.00 10.00 10.00 0.00

MRI 0.00 Biopsy CT scan PET scan Less than 1 Between 1 Between 2 4 weeks or Chest x-ray Broncoscopy week and 2 weeks and 3 weeks more Sputum cytology Figure 3.10: Time to diagnosis Figure 3.8: Type of diagnostic test

Lung Cancer 2018 Australian PEEK Study 100 Section 3 Diagnosis delivery Participants were asked who gave them their diagnosis and where the diagnosis was given. The majority were diagnosed by a respiratory specialist (N=29, 36.25%), followed by a general practitioner (N= 17, 21.25%) and surgeon (N= 16, 20.00%).

Table 3.11: Diagnosis provider Count Diagnosis provider Percent (N=80) Respiratory specialist 29 36.25 Figure 3.12: Diagnosis location General practitioner 17 21.25 Surgeon 16 20.00 Genetic and biomarker tests Oncologist 14 17.50 Participants were asked whether they had ever had a ED doctor 1 1.25 discussion about genetic tests or tests to see if there Gastroenterologist 1 1.25 were biomarkers that might be relevant to their Read CT results 1 1.25 condition or treatment. There were nine participants Specialist GP 1 1.25 (11.25%) that indicated that they had brought up the topic for discussion with their doctor and 30

participants (37.50%) that reported that their doctor had brought up the topic for discussion. There were also 41 participants (51.25%) that indicated that no one had ever spoken to them about this.

Table 3.13: Discussions about genetic tests Discussions about genomic/gene Count Percent testing/biomarkers relevant (N=80) to treatment? Participant brought up the topic with doctor for discussion 9 11.25 Figure 3.11: Diagnosis provider Doctor brought up the topic with participant for discussion 30 37.50 Diagnosis location No one has ever spoken to Most participants received their diagnosis at the partcicpant about this type hospital (N=30, 37.50%), followed by a specialist clinic of test 41 51.25 (N=28, 35.00%).

Table 3.12: Diagnosis location Count Location Percent (N=80) Hospital 30 37.50 Specialist clinic 28 35.00 General practice 16 20.00 At practice rooms at hospital 3 3.75 Home visit 2 2.50 Over the phone 1 1.25

Figure 3.13: Discussions about genetic test

Lung Cancer 2018 Australian PEEK Study 101 Section 3 In relation to sub-group variations, 30 participants 88.24%), stage III cancer (N=12, 70.59%), no distant (37.50%) of the cohort responded that their doctor metastases (N=27, 79.41%), more pain (N=23, had brought up the topic of biomarkers/genetic 71.88%), those that lived in regional or remote areas testing. Those with stage IV lung cancer or distant (N=10, 66.67%), and those that lived in an area with a metastases (N=24, 52.17%), those with brain low to mid SEIFA (N=21, 70.00%) responded more metastases (N=14, 63.64%), and those with less pain frequently than the general cohort that no one had (N=23, 47.92%) responded more frequently than the spoken to them about biomarkers/genetic testing. general cohort that their doctor had brought up the Those that had stage IV lung cancer or distant topic of biomarkers/genetic testing more frequently metastases (N=14, 30.43%), those with less pain, and than the general cohort (Table 3.14). those that lived in an area with high SEIFA (N=20, 40.00%) responded less frequently than the general Forty-one participants responded that no one had cohort, that no one had spoken to them about discussed biomarkers/genetic testing with them biomarkers/genetic tests (Table 3.14). (51.25%). Those with stage I or II lung cancer (N=15,

Table 3.14: Discussions about genetic tests by subgroups All Conversations about genetic testing Lung cancer stage Distant metastases participants No distant Distant Stage I and II Stage III Stage IV metastases metastases N=80 N=17 N=17 N=46 N=34 N=46 I brought up the topic with my doctor for discussion 9(11.25%) 0 (0.00%) 1 (5.88%) 8 (17.39%) 1 (2.94%) 8 (17.39%) My doctor brought up the topic with me for discussion 30 (37.50%) 2 (88.24%) 4 (23.53%) 24 (52.17%) 6 (17.65%) 24 (52.17%) No one has ever spoken to me about this type of test 41 (51.25%) 15 (88.24%) 12 (70.59%) 14 (30.43%) 27 (79.41%) 14 (30.43%) All Brain metastases Energy/fatigue participants Brain Other Better Worse metastases metastases No metastases energy/fatigue energy/fatigue N=80 N=22 N=24 N=34 N=42 N=38 I brought up the topic with my doctor for discussion 9(11.25%) 3 (13.64%) 5 (20.83%) 1 (2.94%) 4 (9.52%) 5 (13.16%) My doctor brought up the topic with me for discussion 30 (37.50%) 14 (63.64%) 10 (41.67%) 6 (17.65%) 18 (42.86%) 12 (31.58%) No one has ever spoken to me about this type of test 41 (51.25%) 5 (22.73%) 9 (37.50%) 27 (79.41%) 20 (47.62%) 21 (55.26%) All Pain Gender Age participants Older Younger Less pain More pain Female Male (55 and older) (18 -54) N=80 N=48 N=32 N=66 N=14 N=36 N=44 I brought up the topic with my doctor for discussion 9(11.25%) 7 (14.58%) 2 (6.25%) 7 (10.61%) 2 (14.29%) 5 (13.89%) 4 (9.09%) My doctor brought up the topic with me for discussion 30 (37.50%) 23 (47.92%) 7 (21.88%) 26 (39.39%) 4 (28.57%) 11 (30.56%) 19 (43.18%) No one has ever spoken to me about this type of test 41 (51.25%) 18 (37.50%) 23 (71.88%) 33 (50.00%) 8 (57.14%) 20 (55.56%) 21 (47.73%) All Location Education SEIFA participants Regional/ Trade or high Mid to Low Metropolitan Remote school University High SEIFA SEIFA N=80 N=65 N=15 N=40 N=40 N=50 N=30 I brought up the topic with my doctor for discussion 9(11.25%) 8 (12.31%) 1 (6.67%) 3 (7.50%) 6 (15.00%) 7 (14.00%) 2 (6.67%) My doctor brought up the topic with me for discussion 30 (37.50%) 26 (40.00%) 4 (26.67%) 14 (35.00%) 16 (40.00%) 23 (46.00%) 7 (23.33%) No one has ever spoken to me about this type of test 41 (51.25%) 31 (47.69%) 10 (66.67%) 23 (57.50%) 18 (45.00%) 20 (40.00%) 21 (70.00%)

Lung Cancer 2018 Australian PEEK Study 102 Section 3 Experience of genetic tests Table 3.15: Experience/interest in genetic and Participants were asked what their experience of, or biomarker test interest in genetic and biomarker tests. Half of the Test for Count participants noted that they had not had this test, but genomic/gene/biomarker Percent (N=80) would like to (N=40, 50.00%). There were 28 relevant to treatment participants (35.00%) that reported having this test Participant had this test and and not paying out of pocket for it, 4 had this test as did not have to pay out of 28 35.00 part of a clinical trial (5.00%), and six paid for this test pocket for it Participant had this test themselves (7.50%), a total of 38 participants through a clinical trial 4 5.00 (47.50%) have had this test. There were 2 participants Participant had this type of (2.50%) indicated that they had not had this test and test and paid for it myself 6 7.50 were not interested in it. Participant did not have this test but would like to 40 50.00 In relation to sub-groups, variations were observed Participant did not have this for those that have not had biomarker/genetic tests test and is not interested in it 2 2.50 but would like to. In the general cohort, half of the participants indicated that they had not had biomarker/genetic tests but would like to (N=40, 50.00%). Those with stage IV lung cancer or distant metastases (N=15, 32.61%), those with less pain (N=18, 37.50%) and those that lived in an area with higher SEIFA (N=21, 42.00%) indicated less frequently than the general cohort that they did not have these tests but would like to. Those with stage I and II lung cancer (N=14, 82.35%), stage III lung cancer (N=11, 64.71%), those without distant metastases (N=25, 73.53%), those that had more pain (N=22, 68.75%), and those that lived in an area with a mid to low SEIFA (N=19, 63.33%) indicated more frequently than the Figure 3.14: Experience/interest in genetic and general cohort that they did not have these tests but biomarker test would like to (Table 3.16).

Twenty-eight participants (35.00%) indicated that they have had this type of test at no cost. Those that had stage IV lung cancer or distant metastases (N=21, 45.65%), those with brain metastases (N=11, 50.00%) and those that had less pain (N=23, 47.92%) indicated more frequently than the general cohort that had these tests at no cost (Table 3.16)

Lung Cancer 2018 Australian PEEK Study 103 Section 3 Table 3.16: Interest in genetic and biomarker test by subgroup Interest in genetic testing All Lung cancer stage Distant metastases participants No distant Distant Stage I and II Stage III Stage IV metastases metastases N=80 N=17 N=17 N=46 N=34 N=46 I have had this test and did not have to pay out of pocket for it 28 (35.00%) 2 (11.76%) 5 (29.41%) 21 (45.65%) 7 (20.59%) 21 (45.65%) I have had this test through a clinical trial 4 (5.00%) 0 0 4 (8.70%) 0.00 4 (8.70%) I have had this type of test and paid for it myself 6 (7.50%) 0 0 6 (13.04%) 0.00 6 (13.04%) I have not had this test and am not interested in it 2 (2.50%) 1 (5.88%) 1 (5.88%) 0.00 2 (5.88%) 0.00 I have not had this test but would like to 40 (50.00%) 14 (82.35%) 11 (64.71%) 15 (32.61%) 25 (73.53%) 15 (32.61%) All participants Brain metastases Energy/fatigue Brain Other Better energy Worse energy metastases metastases No metastases /fatigue /fatigue N=80 N=22 N=24 N=34 N=42 N=38 I have had this test and did not have to pay out of pocket for it 28 (35.00%) 11 (50.00%) 10 (41.67%) 7 (20.59%) 17 (40.48%) 11 (28.95%) I have had this test through a clinical trial 4 (5.00%) 3 (13.64%) 1 (4.17%) 0.00 3 (7.14%) 1 (2.63%) I have had this type of test and paid for it myself 6 (7.50%) 2 (9.09%) 4 (16.67%) 0.00 1 (2.38%) 5 (13.16%) I have not had this test and am not interested in it 2 (2.50%) 0 0.00 2 (5.88%) 2 (4.76%) 0 I have not had this test but would like to 40 (50.00%) 6 (27.27%) 9 (37.50%) 25 (73.53%) 19 (45.24%) 21 (55.26%) All participants Pain Gender Age Older (55 Younger Less pain More pain Female Male and older) (18 -54) N=80 N=48 N=32 N=66 N=14 N=36 N=44 I have had this test and did not have to pay out of pocket for it 28 (35.00%) 23 (47.92%) 5 (15.63%) 24 (36.36%) 4 (28.57 %) 13 (36.11%) 15 (34.09%) I have had this test through a clinical trial 4 (5.00%) 3 (6.25%) 1 (3.13%) 4 (6.06%) 2 (14.29%) 3 (8.33%) 4 (9.09%) I have had this type of test and paid for it myself 6 (7.50%) 3 (6.25%) 3 (9.38%) 4 (6.06%) 1 (7.14%) 1 (2.78%) 3 (6.82%) I have not had this test and am not interested in it 2 (2.50%) 1 (2.08%) 1 (3.13%) 1 (1.52%) 0 0 1 (2.27%) I have not had this test but would like to 40 (50.00%) 18 (37.50%) 22 (68.75%) 33 (50.00%) 7 (50.00%) 19 (52.78%) 21 (47.73%) All participants Location Education SEIFA Metropolitan Regional/ Trade or high University High SEIFA Mid to Low N=80 N=65 Remote N=15 school N=40 N=40 N=50 SEIFA N=30 I have had this test and did not have to pay out of pocket for it 28 (35.00%) 25 (38.46%) 3 (20.00%) 14 (35.00%) 14 (35.00%) 21 (42.00%) 7 (23.33%) I have had this test through a clinical trial 4 (5.00%) 3 (4.62%) 1 (6.67%) 2 (5.00%) 2 (5.00%) 3 (6.00%) 1 (3.33%) I have had this type of test and paid for it myself 6 (7.50%) 5 (7.69%) 1 (6.67%) 1 (2.50%) 5 (12.50%) 5 (10.00%) 1 (3.33%) I have not had this test and am not interested in it 2 (2.50%) 1 (1.54%) 1 (6.67%) 1 (2.50%) 1 (2.50%) 0 2 (6.67%) I have not had this test but would like to 40 (50.00%) 31 (47.69%) 9 (60.00%) 22 (55.00%) 18 (45.99%) 21 (42.00%) 19 (63.33%)

Lung Cancer 2018 Australian PEEK Study 104 Section 3 Lung cancer biomarkers would be…Back then, it was obviously a lot different. They gave him radiation and that was all they could Participants were asked if they had any particular lung do, really. He died from that within a couple of years. cancer biomarkers, the most common response was Participant 7 “I’m not sure” (N=38, 47.50%). Forty-two participants (52.50%) identified they had biomarkers; 22 had ALK No, nothing. I said "I’ve read this stuff about (27.50%), 17 had EGFR (21.25%) and 3 had ROS1 targeted therapies", and they said you didn't need (3.75%). No participants identified more than one that. I don't know. Nobody ever really told me biomarker. Of the participants that described having anything. Participant 11 a particular biomarker, seven had responded a question about genetic testing/biomarkers that “I No, that wasn't discussed at all. Testing for genes is have not had this test but would like to” and six of something that happened during the course of my re- these had responded that “No one has ever spoken to diagnosis. I had chemo, and they said it should be me about this type of test”. fine. Then through my routine check-up, they found it was back again, and they tested me for the ALK gene Table 3.17: Biomarkers mutations. But not initially. Participant 42

Biomarkers Count (n=80) Percent No, I only found out what those were…One was the Australian lung foundation conference. Yes, that's it. ALK 22 27.50 That's when I found out about markers. Participant EGFR 17 21.25 73 ROS1 3 3.75 I’m not sure 38 47.50 Participant had a conversation about biomarkers

Yes, I've actually have had the test…I have had the tests and it came back, it's just bad luck [chuckles] Essentially, I guess. Which is fortunate for the rest of the family. Then obviously because it means they better need to go through the genetic testing and the worries. I'd hate to think that my nieces and nephews had this as a phase. I'm looking at whether they had the gene, genetic disposition to getting any cancer. [INTERVIEWER: Did they test your tumour to see if it was likely to respond to particular treatments?] Yes, it was a FISH test? That's how Figure 3.15: Biomarkers obviously they found the mutation, so I'm on a targeted treatment for my particular mutation which Participant had not had any conversation about is great because it means my quality of life is greatly biomarkers increased as a result of that, so I'm very lucky in that aspect. Participant 62 No, they didn't. I wish they had it because I've done a fair bit of research, not so much into that but into my Yes. My oncologist, when I saw him for the first time, condition. I wish that I did know something about he suggested that because I was the age I was, which that. It's probably too late now. Once they've done a is I'm only 44 or 43 at the time. I've never smoked, he biopsy I don't think they can…I don't know what suggested that maybe we have the biopsy tested for they've done. I'm going to ask my specialist about it. an ALK mutation. Participant 68 I should see him in a few weeks. Participant 1 They did. I knew nothing about it. I know, of course, No, no. I'm surprised because they did ask me about am a Google person, so I probably Googled whether anyone else in the family had has it and I everything at the time. Nobody really mentioned said "yes". My grandfather was diagnosed when he anything until I went in for surgery. I was diagnosed was in his 70s and they'd said that then, that they in the October, it took a while for all the tests to go thought that he had had it for like 20 years which through, and I went in for surgery a couple of weeks

Lung Cancer 2018 Australian PEEK Study 105 Section 3 before Christmas, in the December. At that point, I knew that there were some known mutations that they said that they hadn't saved it then but were in some lung cancers. I knew that because I was they…when the surgeon came to see me after so they a never smoker. I was more likely be one of those removed my upper right lung and lobectomy or people and I knew that there were some targeted whatever they call it. When the surgeon came in to treatments that were available if I ended having one see me after surgery, they said that they were of the mutations. Participant 59 running some testing for me to see if I had any mutations. When I asked them what it was, all that I didn't really know much about that at the time but they would tell me after a few days in hospital before then when she explained that she wasn't very good I left, was that it was EGFR Adenocarcinoma, and it at giving information. She's just said come up and was obviously from a non-smoker female we'll do this. She didn't really like questions, but I perspective, it tended to be more prevalent. I was a would ask questions anyway. She explained that-- smoker in my 20s but I stopped at 30, and I was 40 When the next visit, the results had come through when I was diagnosed. That was all they mentioned. and I did have a mutation, the EGFR, and that it After the surgery, I went and saw an oncologist, and would just mean no chemo and just a tablet every he said that there had been a small amount of day. There would be some side effects but not as vascular invasion with the tumour and that they severe as going on chemo. It would give me more wanted me to do adjuvant chemo. They started me time and more quality. Maybe about the next two on Cisplatin. He also mentioned EGFR but he said it years, he said without it, I might have…If I don't do with time, and this is going back three years when I anything I might get a year, but if I had these tablets, was first diagnosed. He said that if the cancer did it might give me even an extra year, two years or come back that there were a lot of options with something. I was pretty happy about that. That treatment given the mutation I had the EGFR…Yes, seemed quite good…I felt really bad for him, but I he did mention it then, but he said we would do just couldn’t…I didn't just like the idea at all and just more testing at that time if it came back. I don't lose your quality of life and you are sick all the time, think they did a huge amount of testing. I then did and lose all your hair, and become dependent on the four months of chemo and I was in remission people. Participant 16 until I had a seizure and a brain…they said a brain tumour. I had not had any head scans for three Well, they didn't explain it…Well, they didn't tell me years. They were just doing CT test scan which is what they were doing. They just went ahead and did standard, but I've since found out that with the it which is great, which is a bit awesome but I EGFR, it does come back a lot in the brain, so I'm Googled it up. I was looking it up then I realized that surprised that they don't do more checks on the there was a mutation and that if I had one of them, it brain. Participant 66 would make me eligible for the treatment... That's why she was all excited when she told me. It's pretty Understanding of the implication of biomarkers hard to explain that to somebody. I can't explain that to people and I don't really understand it. It's The initial test, the eGFR wasn't explained to me. It probably, I did say because I thought before my was just that he was going to do a test. I had no idea family banned me from Google, I had woken up and I what it was for and I didn't even get told that it came still said to them, "Are you are going to test the back positive when they get it. That was the only biopsy for gene mutations and stuff?" I said, "Yes, conversations that I initially had about testing. Then yes, don't worry, we're going to test for everything." when chemo and radiation didn't work, I did my own Nobody really explained it because there's probably research and found ALK and asked if I could be tested not much point, it's very confusing. Participant 43 for ALK. Participant 18 Well, as far as I was aware, it would show up if I has Basically, in terms of the ALK-positive, from what I a genetic mutation, which would lead to being able can understand it's a fairly rare type of lung cancer to take immunotherapy drugs versus chemotherapy. and there's targeted medicine that you can take for It was part of the treatment plan to discover whether it. Participant 35 or not I had that and which way we would go with treatment. Participant 44.

Lung Cancer 2018 Australian PEEK Study 106 Section 3 Understanding of prognosis case because I was young, though I'm not that young, and I'm fit. Every year it gets better. I couldn't Participants were asked to describe what their current tell you what it currently is, but it's been nearly two understanding of their prognosis was. There were two years now. Participant 11 main themes including understanding prognosis in relation to survival rates and/or statistics (n=17, No. Well sorry, okay my current prognosis is that I 21.25%) and that their tumour has been removed might get a couple of years if I was very lucky, and I and/or there is no evidence of disease (n=17, 21.25%). was one of 4% percent of the people that have what I There were 15 participants (18.75%) that did not have. Again, I could live for five years. Like I said, know their prognosis and eight participants (10.00%) since then I spoke to the guys who are still alive after that understood that their cancer is terminal and eight years, having the same as me. A bit of an incurable. Other themes included participants unknown quantity, really. I have to just be positive. understanding of prognosis is that treatment is Participant 25 working, but they do not know their prognosis (n=7, 8.75%), treatment is working (good prognosis) (n=6, No. No one's actually said to me it will be this many 7.50%) and treatment may be working now, but it is years or any of those numbers. I've had the likely that it will stop working at some stage (n=6, statement that it's in most cases with lung cancer it's 7.50%). months but because I have the mutation then it would be more likely to be years but not a number. In relation to sub-group variations, participants with The only thing I know about lung cancer in general brain metastases (36.36%) reported an understanding with my mutation they talk about 15% survival rate of prognosis in relation to survival and statistics more at 5 years. Participant 37 frequently than the general population (21.25%), while those from mid to low SEIFA (10.00%), those Participant's understanding of prognosis is that their with other metastases (8.33%) and more pain (6.25%) tumour has been removed and/or there is no reported this less frequently. Participants with stage I evidence of disease (in remission) to III cancer (32.35%) and those with other metastases (32.35%) reported that their tumour has Yes. In terms of prognosis, it's a little bit difficult to been removed and/or there is no evidence of disease say, but I can tell you that since February 2015 I've (in remission), more frequently than the general had no evidence of disease. The last scan I had was in population (21.25%), while those with brain July, which is a CT scan with contrast, it's chest, metastases reported this less frequently (9.09%). abdo, pelvis. It was negative. It was no evidence of Participants with stage I and II cancer (5.88%) any metastatic or local disease. If I assume that I reported not knowing their prognosis less frequently make it to February next year, that'll be four years. than the general population (18.75%), while those The prognosis of four years without a recurrence in with stage II cancer (29.41%) reported this more lung cancer, especially when you were Stage 3, is frequently. Participants with stage I and II cancer reasonable. Participant 23 reported that their treatment is working (good prognosis) (17.65%) more frequently than the general Currently, I've been no evidence of the disease for population (7.50%). Finally, participants from regional five years. It's quite exceptional because my or remote areas (26.67%) reported understanding diagnosis was stage four and I was given 10 to 13 that their cancer is terminal or incurable, more months to live. Yes, I know. I’m an outlier. frequently than the general population (10.00%). Participant 39

Participant's understanding of prognosis is in Excellent. Yes. More specifically, I had a PET scan relation to survival rates and/or statistics before starting treatment and that's confirmed-- My daughter said it lit up like a Christmas tree, that Once I've had surgery and chemo because they found confirmed the presence of the cancer tumors in a tiny speck in one lymph node that was closest to various parts of the body. I then started after re- the tumor which was removed at the same time so examination of the biopsy tissue to see if it stained everything was removed, but they said I had 35-65% for particular substance. I then started immune chance of five years plus survival. Then they said therapy with Pembrolizumab, Keytruda, and I had however those figures are probably skewed in my three treatments of that. A drip into the arm every

Lung Cancer 2018 Australian PEEK Study 107 Section 3 three weeks over nine weeks and then four weeks Participant's understanding of prognosis is that their later I had another PET scan and there was no sign of cancer is terminal and incurable cancer. That's about a year ago. I've had regular PET scans after every three treatments and they continue There's no recovery. It's an incurable, terminal illness to be clear. It is, but it seems to be-- Even the so I don't ask-- I'm not one to, "Okay, how much time oncologist seems to be astonished. Participant 53 have I got because then I'm God," so they can't tell me when I will die. Am I aware there's a high chance Participant does not know their prognosis of death? Yes, I am absolutely aware. Participant 29 Current prognosis stage four, palliative care. Yes No. Because they don't really talk about it. I do go non-small cell, lung cancer... Yes, I'm in palliative back. This month is quite a busy month so by the end care. That's my current…I have some radiation this of the month, yes, I should probably give you a more year currently. No full treatment can be offered at definitive answer. On the 11th, I do go to my this stage. Participant 34 radiation oncologist but between then and the 26th I do have another CT done and then I see my Yes, I get confused with all the words, so I don't oncologist chemo. I see her afterward...Well, I think know if I'm telling you the right thing. It's terminal. they should. They should say like, "The treatment is It's inoperable, incurable. It's stage four metastatic. going as planned," or, "It's not going as planned," or, Participant 61 "There is a couple of support groups or quite a few." There is a gentleman on treatment, he's just done his It's stage four. That's the other thing I didn't treatment, he's stage 3A but he's now going onto mention. They did have a PET scan, which immunotherapy but he doesn't have a genetic determined my staging, and I was diagnosed at mutation anyway. I just don't know why these sorts stage four, and they basically said "It's stage four, no of things aren't being considered to me. Participant 5 cure, on treatment for the rest of your life." I actually said to them, "I don't want to know how long I've got I remember asking the question that, basically, with to live." Participant 67 each lesion, how long's it going to take and to get some progress happening. No one wants to answer, It's terminal, obviously, but the prognosis sort of is, so I think it's more of a wait and see whether it as long as the CKI drugs are working, I've got a responds and that sort of thing. Participant 21 sustainable life for now. When that drug stops working, there's another drug option to go onto. My oncologist has never really talked about There's apparently a few more options down the prognosis, I just sense that's his way. Participant 47 track whenever drugs stop working I envisage…I don't know, there's some people who've been on these drugs for years and some only get a couple of years out of them, and some only get better out of them, everyone's an individual. We don't know but I like to think I'm going to get a bit longer. Participant 80

Lung Cancer 2018 Australian PEEK Study 108 Section 3 Table 3.18: Understanding of prognosis Understanding of prognosis All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant's understanding of prognosis is in 17 21.25 2 11.76 5 29.41 10 21.74 7 20.59 relation to survival rates and/or statistics Participant's understanding of prognosis is that their tumour has been removed and/or there is 17 21.25 8 47.06 3 17.65 6 13.04 11 32.35 no evidence of disease (in remission) Participant does not know their prognosis 15 18.75 1 5.88 5 29.41 9 19.57 6 17.65 Participant's understanding of prognosis is that 8 10.00 0 0.00 3 17.65 5 10.87 3 8.82 their cancer is terminal and incurable Participant's understanding of prognosis is that treatment is working, but does not know 7 8.75 2 11.76 1 5.88 4 8.70 3 8.82 prognosis Participant's understanding of prognosis is that treatment is working (good prognosis) 6 7.50 3 17.65 0 0.00 3 6.52 3 8.82 Participant's understanding of prognosis is that treatment may be working now, but it is likely 6 7.50 0 0.00 1 5.88 5 10.87 1 2.94 that it will stop working at some stage

Understanding of prognosis All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant's understanding of prognosis is 17 21.25 8 36.36 2 8.33 7 20.59 12 28.57 5 13.16 in relation to survival rates and/or statistics Participant's understanding of prognosis is that their tumour has been removed and/or 17 21.25 2 9.09 4 16.67 11 32.35 10 23.81 7 18.42 there is no evidence of disease (in remission) Participant does not know their prognosis 15 18.75 5 22.73 4 16.67 6 17.65 7 16.67 8 21.05 Participant's understanding of prognosis is 8 10.00 3 13.64 2 8.33 3 8.82 6 14.29 2 5.26 that their cancer is terminal and incurable Participant's understanding of prognosis is that treatment is working, but does not 7 8.75 1 4.55 3 12.50 3 8.82 5 11.90 2 5.26 know prognosis Participant's understanding of prognosis is that treatment is working (good prognosis) 6 7.50 3 13.64 0 0.00 3 8.82 3 7.14 3 7.89 Participant's understanding of prognosis is that treatment may be working now, but it 6 7.50 2 9.09 3 12.50 1 2.94 2 4.76 4 10.53 is likely that it will stop working at some stage

Understanding of prognosis All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

Lung Cancer 2018 Australian PEEK Study 109 Section 3 Table 3.18: Understanding of prognosis (continued) Understanding of prognosis All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

0 In relation to survival Tumour has been Participant does not Their cancer is terminal Treatment is working, Tr eatm ent is working Tr eatm ent may be rates and/or statistics removed and/or there is know their prognosis and incurable but does not know (good prognosis) working now, but it is no evidence of disease prognosis likely that it will stop (in remission) working at some stage

Figure 3.16: Understanding of prognosis (Percentage of all participants)

Lung Cancer 2018 Australian PEEK Study 110 Section 4 Section 4 Decision-making

Lung Cancer 2018 Australian PEEK Study Section 4

Section 4: Experience of health professional communication

Discussions about treatment

Decision-making

Changes in decision-making

112 Lung Cancer 2018 Australian PEEK Study Section 4 Discussions about treatment meeting happens once a week and I'm assuming that at that point, that's where they decide amongst all of Participants were asked what they recalled being them the treatment and that's where all of that was discussed in relation to treatment options when they decided. Participant 37 were first diagnosed. The most common theme related to participants recalling being told that there It wasn't so much a discussion, it was a was only one treatment plan available, with limited recommendation of what treatment plan I should discussion about options. This was described by 36 take. I've lost my train of thought. It was a participants (45.00%). The next most common theme recommendation that I follow. There wasn't really a was discussions about targeted treatment (n=20; discussion about it. It was basically said that this 45.00%), followed by being recommendations of both would be the options we would take. Then when it radiation therapy and chemotherapy (n=15; 18.75%), was chemotherapy that was initially recommended, I and recommendations of surgery (n=15; 18.75%). attended a chemotherapy education class, at the hospital I was being treated at, to get more In relation to sub-group variations, participants with information about it, which was really helpful. stage III cancer (64.71%), those with stage I to III Participant 44 cancer or no distant metastases (55.88%) and those with more pain (68.75%), described being told about It was really, "This is the best option to go with after one treatment option only, more frequently than the the molecular results," to see there is the best option general population (45.00%), while those with less to go with. The expectation was that I should have pain (29.17%) described this less frequently. fairly good results with that. There was no real Participants with brain metastases (40.91%) described discussion about other treatments; it was just discussing targeted treatments, more frequently than recommended that this was the correct treatment to the general population (25.00%), while those with have. Participant 53 stage I to III cancer or no distant metastases (8.82%) and those with more pain (12.50%) described this less Participant describes discussing targeted treatment frequently. Participants with stage II cancer (29.41) recalled discussing both chemotherapy and radiation I was told that I was ALK positive and that I could therapy, more frequently than the general start on treatment with this drug which is a targeted population. Participants with brain metastases therapy drug. It's not really called...I guess everyone (4.55%) described being recommended for surgery calls it chemotherapy tablets because it makes it less frequently than the general population (18.75%), easier to understand. I was just told that I would be while those with stage I to II cancer or no distant starting on these drugs. At the time, I was happy metastases described this more frequently (29.41%). because when you're told that you're stage four and you only have six to 12 months to live, you just grab Participant describes being told one treatment plan on to anything. I'm one of those people. Participant with little discussion 36

Basically, we didn't discuss it. It was just, "The She basically showed me the different-- Because she tumour is here. It's operable. It's large, but it's in a didn't know at the time which one it was. She was good spot. We'll just cut it out". It was basically, saying I wouldn't be able to have immunotherapy. "We'll just cut it out, and it'll be gone. You'll be fine, When you research, there was lots of stuff about and we don't think that you need chemo". That was immunotherapy, but she said because my PD-L1 is all. That was it, and I'm like, "Okay". Participant 11 zero percent, immunotherapy wouldn't work for me is what she said. She said that because I have EGFR There wasn't any option. The treatment was mutation, with targeted therapy you'd have massive chemotherapy and radiation. I was told I couldn't tumour shrinkage which sounded good. Then she have surgery because of where the tumours were. talked about if I didn't have that, because she didn't They were in my lymph glands that surround my know at the time, it would be chemo. Participant 49 bronchus and quite close to th aorta. Surgery was not possible. They had said that amongst specialists They had really just thought about the fact that to who initially diagnosed me, he said I went to what there could be chemotherapy, but they were hoping they call their multi disciplinary team, and that that would find the mutation which would mean a

Lung Cancer 2018 Australian PEEK Study 113 Section 4 targeted therapy or an immunotherapy. I was kind of then a couple of days later, he rang me back and he told about all the possible treatment options, but it said, "No, I'm going to deliver enzymes and you're would really depend on the gene markers to say healthy enough that I'm going to give you the whether there was anything going on there. stronger chemos." He was very good at Participant 62 communicating what options I had at that stage, I suppose, particle options go. There was never Once all the testing came back, they thought I was options about trials or tried therapy drugs that were EGFR, they had already told me that there was this available at a cost. There was only particle items. drug called Iressa, and that's the one I'd probably be Participant 18 on, because I asked a lot of questions. But then, as it actually turned out, I wasn't EGFR, so they came to Surgery was out of the question. I think it was only me, and said, "We've got your results," and I said, chemo and radiation. I went and had radiation…I "Am I EGFR?" and she said "No." I said, "Oh," had it about the same time as I was having the thinking, "Oh goodness, it's not a good mutation." chemo. Radiation, chemotherapy and no surgery. She said, "No, it's even better. You're ALK." I'm like, Participant 65 "Oh, okay." Didn't know what that meant at the time. Then, they sort of said to me, "Your treatment Well, surgery was out of the point, so the treatment options are, there's the drugs, first line-therapy. You was going to be chemo and radiation. Participant 70 can no longer access it by the Compassionate Access Program, so it will cost a $100,000 a year, but we do Participant describes being recommended surgery have another drugs in clinical trial, which is now in phase three, which was comparing chemotherapy to When I was first diagnosed, the surgeon said what's now known as Ceritinib." You get explained because it was only 2.5 centimetres, so it wasn't big, the randomization process, and basically said, "We surgery was the best option. Probably it was the have this available at our hospital." Given that it was standard option then. Participant 12 phase three, they already had some early data to show that it was safe and effective, obviously, in the Conversation I had about treatment-- just they earliest stages, and they were really excited about it. offered me the surgery which they were hoping was I guess, given that it was a second-line therapy, we going to be 100% a cure. Other than that, I can't just decided to go, versus the first-line, which was really remember but I don't think there was any only going to add more pressure and stress to my other discussion really. Just surgery or-- It was a family, in terms of financially, and also in terms of…it touch and go thing whether they could do the wasn't an earlier drug. I mean, if there's one better, surgery, but he decided that it was right. The surgery we looked at it as, "Well, if it's a second generation, was pretty brutal, took a long time to get over it and and it's meant to be more potent, we want to get on to be honest with you, I've never actually got over it top of this," because I was in such a bad way, we in the sense that I've got pretty severe nerve needed something really powerful, to contain the damage. My left boob, I can't feel it and under my tumor. Participant 67 left ribs, it's still doesn't feel great. Participant 24

Participant describes being recommended both I went to the thoracic surgeon and he just said, radiation therapy and chemotherapy "We'll go in and see what we can do, then go from there." He said, "No promises." They went in and They sort of looked at, there wasn't really any other they removed the top lobe of my right lung and then option, but just to hit it hard with chemo and they did what they called modelling along the left radiation at the same time. Participant 5 side and they tested that to see what was going to happen from there. Participant 73 When I was first diagnosed, my only discussions, my only options, I was told was chemo and radiation. It wasn't operable so I did have the chemo and radiation. They couldn't operate on it and that was the only discussions that I had about treatment options. He told me, he explained to me what chemos he thought he was going to put me on, and

Lung Cancer 2018 Australian PEEK Study 114 Section 4 Participant describes being told their cancer was At that time and not knowing anything about lung inoperable cancer, I was just basically told chemo and also radiation to the lungs...She said surgery wasn’t an When I was first diagnosed, my only discussions, my option. [Interviewer: Did they give you options?] only options, I was told was chemo and radiation. It Basically like, "This is the best option that we have wasn't operable so I did have the chemo and for you." I just basically took what they told me radiation. They couldn't operate on it and that was because I don’t know any better. Participant 35 the only discussions that I had about treatment options. Participant 18 Well, surgery was out of the point, so the treatment was going to be chemo and radiation. Participant 70

Table 4.1: Conversations about treatment Conversations about treatment All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes being told one treatment 36 45.00 8 47.06 11 64.71 17 36.96 19 55.88 plan with little discussion Participant describes discussing targeted treatment 20 25.00 1 5.88 2 11.76 17 36.96 3 8.82 Participant describes being recommended both 15 18.75 2 11.76 5 29.41 8 17.39 7 20.59 radiation therapy and chemotherapy Participant describes being recommended surgery 15 18.75 6 35.29 4 23.53 5 10.87 10 29.41 Participant describes being told their cancer was 8 10.00 2 11.76 2 11.76 4 8.70 4 11.76 inoperable All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes being told one 36 45.00 8 36.36 9 37.50 19 55.88 16 38.10 20 52.63 treatment plan with little discussion Participant describes discussing targeted treatment 20 25.00 9 40.91 8 33.33 3 8.82 11 26.19 9 23.68 Participant describes being recommended 15 18.75 4 18.18 4 16.67 7 20.59 4 9.52 11 28.95 both radiation therapy and chemotherapy Participant describes being recommended 15 18.75 1 4.55 4 16.67 10 29.41 8 19.05 7 18.42 surgery Participant describes being told their cancer 8 10.00 3 13.64 1 4.17 4 11.76 2 4.76 6 15.79 was inoperable All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes being told one treatment 36 45.00 14 29.17 22 68.75 15 41.67 21 47.73 plan with little discussion Participant describes discussing targeted treatment 20 25.00 16 33.33 4 12.50 11 30.56 9 20.45 Participant describes being recommended both 15 18.75 8 16.67 7 21.88 3 8.33 12 27.27 radiation therapy and chemotherapy Participant describes being recommended surgery 15 18.75 7 14.58 8 25.00 8 22.22 7 15.91 Participant describes being told their cancer was 8 10.00 4 8.33 4 12.50 4 11.11 4 9.09 inoperable

Lung Cancer 2018 Australian PEEK Study 115 Section 4

All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes being told one 36 45.00 30 46.15 6 40.00 20 50.00 16 40.00 24 48.00 12 40.00 treatment plan with little discussion Participant describes discussing targeted treatment 20 25.00 16 24.62 4 26.67 6 15.00 14 35.00 16 32.00 4 13.33 Participant describes being recommended both radiation therapy 15 18.75 13 20.00 2 13.33 5 12.50 10 25.00 7 14.00 8 26.67 and chemotherapy Participant describes being 15 18.75 11 16.92 4 26.67 7 17.50 8 20.00 10 20.00 5 16.67 recommended surgery Participant describes being told their cancer was inoperable 8 10.00 8 12.31 0 0.00 3 7.50 5 12.50 4 8.00 4 13.33

50.00

45.00

40.00

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00 One treatment planTargeted treatment Radiation therapy Recommended Chemotherapy Cancer was wi th littl e and chemotherapy surgery inoperable discussion Figure 4.1: Conversations about treatment

Decision-making (45.45%) and those that had a university degree (52.50%) considered the side effects of treatment The most common theme was considering the side more frequently than the general population effects of treatment (n=28; 35.00%). This was (35.00%), while those with stage I or II cancer followed by considering efficacy/evidence of the (17.65%), those that were older (22.22%), those from treatment (n=19; 23.75%) and quality of life (n=18; regional or remote areas (20.00%), those with a trade 22.50%). There were 17 participants (21.25%) that or high school education (17.50%) and those from a described primarily following the advice of their mid to low SEIFA (23.33%) described this less clinician and 14 participants (17.50%) that described frequently. Participants with stage III cancer (35.29%) considering the survival rate or chance of survival and those with a university degree (37.50%) described following treatment. considering efficacy/evidence more frequently than the general population (23.75%), while those with In relation to sub-group variations, participants with stage I and II cancer (11.76%) and those with a trade stage III cancer (52.94%), those that were younger or high school education (10.00%) described this less Lung Cancer 2018 Australian PEEK Study 116 Section 4 frequently. There we no participants with stage III Participant describes considering the cancer that described primarily following the advice of efficacy/evidence their specialist, compared to the general population that noted this (21.25%), while those with other How likely it is to work and when I say that, I do bear metastases described this more frequently (37.50%). in mind the fact that lung cancers prognosis is dismal. Basically, anything better than the prognosis Participants with stage III cancer (5.88%) described that lung cancer is generally given I can tend to considering the survival rate following treatment less consider as worth trying, that's probably the main. frequently than the general population (15.50%). Participant 19 There were no participants with stage I or II cancer that described considering the cost of treatment Really, it's what's going to work the best for me. Not (12.50% in the general population), while those with necessarily how I'm going to feel, that doesn't worry brain metastases considered this more frequently me as such. It's the results more, the positive results. (27.27%).Participants with stage I or II cancer They're being proven to work. We want to give those (23.53%) described considering their family and the a try, and that's the main thing for me. Participant impact on them, more frequently than the general 31 population (12.50%). I guess the proven effectiveness or otherwise of the Participant describes considering the side effects treatment. I guess it would be based on clinical data. Participant 39 Having been through chemotherapy, the biggest thing for me having been on targeted therapy is that Effectiveness first, first and foremost. Participant 53 I have minimal side effects. I take all that into consideration and I haven't lost my hair. I obviously When I was looking at the clinical trial, it was really have no hesitation in doing what's best for me and if important to me that there was data, that there was I have to live with that, I will be sick every day, every evidence to say that this treatment was going to moment, to try to get better I’d do that. The side work. We wanted the best possible treatment effects I took into consideration. Participant 13 available at the time. Participant 67

Like, would it make me sick? Would I lose my hair? Participant describes considering quality of life Would I be bedridden for a few days of the week each time I had a treatment? There'd be questions Number one would be my quality of life. That's about that I would ask is, "What side effects would come it really, I suppose. If my quality of life was terrible I with this if you are offering me something?” wouldn't have the treatment. I've pretty much Participant 30 decided now I wouldn't have chemo after what I've seen. Participant 1 Like when I was given the option or when I was told what treatment I was being given, which is a Quality of life. What else is there? It's a cyclone to targeted therapy in tablet form, for me, if I were to me at the moment because I have no symptoms. I choose between that and the traditional chemo and I feel and look fine. I think if I was in a lot of pain or if I was told what the side effects were, I would was finding breathing difficult, it would potentially probably consider what side effects were and how it be a different conversation, different decision would impact on my lifestyle and my daily living. process? At the moment, I don't feel we have to Participant 36 make a lot of decisions. Participant 57

The side effects mainly, like if it's going to batter my For me, it's definitely about quality of life. So, it body completely, it's not going to be ideal. I'd prefer really comes down to, is the treatment going to-- It to have fewer side-effects now. I've been on three sounds really awful, but it's for me, it's not so much different types of treatment and I'm currently on the about length of life, but the quality that I can best I've ever had and I'd hate to take a backward experience during that time. So, that would probably step from here. Participant 68 be my number one thing, is how much of an effect it's going to have on me. I'm a really active person

Lung Cancer 2018 Australian PEEK Study 117 Section 4 and I really don't, for me, personally don't see the can beat this. It's only your goodwill and your point of existing. Participant 62 conscience that will beat cancer." I used to walk a lot. I couldn't walk a lot, but now I'm getting back on Well, I've got three boys…Day-to-day quality of life is top where I was. Participant 70 pretty important. Participant 69 Yes, the only importance is my family. I guess I just want to be around…I just wanted to get better for Participant follows the advice of their specialist my family. Participant 76

Primarily, probably 50% is the recommendation by Obviously we want to live so that's the big the specialists involved. Well, if not more than that. consideration obviously when they say to you, "Here, I’d probably even say 80%. Participant 2 this is what you need to take". Obviously, you put

your faith in the medical profession and if they tell I listen to my doctors. I don't go do it myself, I have you to do it, basically you do it. That's my attitude but very rarely. I don't Google anything. I don't want unless it really knocks you around. I think because of to know what, because on the computer it's only my experience with the trial, I've become a bit more what other people say anyway and it's not outspoken about or asking more questions now necessarily right. I just listen to my doctors. They've about certain things. Participant 80 done all that training, they've got my best interest at heart. I just listen to what they say, to be honest with Participant describes considering the cost of the you. Participant 15 treatment

Initially, because you've got very little knowledge, Definitely cost is a big thing for me about treatment virtually zero knowledge, because I was with the options. Participant 34 oncologist that I was recommended to, and supposedly, he was specialized in the lung cancer Cost is a big one, the main one and the other things that I had, I think pretty much, we took them at their quality of life and side effects. Participant 37 word: that what they suggested would be the best treatment. Participant 54 This is what came to mind, I had no idea how much it

cost. Initially, when I was taking Tarceva, I think I I know this sounds incredibly passive, but I rely on went into the hospital pharmacy to get it. It was a what they tell me. It's only in the last few months matter of ringing up to make sure that the that I've started to really acquaint myself with the medication was there, and I had to drive all the way process because I've always thought doctors were to the hospital to get it. Eventually, I asked my supposed to be infallible. I’m now realizing that pharmacist just down the road and I asked them if that's not so. When he tells me that he's going to put they would be able to dispense this medication for me on one particular drug, I’ll go, “Okay." Then I'd go me and he was very nice. He rang his supplier and he home and Google it and find out about the side said, "Yes, they could do it." I started getting Tarceva effects and options and so on. I'm assuming that this from him. It was then he told me, he said It's actually is the best option, I've not gone back and said, "What very expensive, if it wasn't on the PBS. It was only do you reckon about such and such, or the clinical then that I knew how much it cost. I think about trial, or whatever the case may be". I've just tended trimming, I've taken to the financial affordability, to roll with it. Participant 60 but if it wasn't on the PBS I was not reimbursed by the government. Participant 41 Participant describes considering the survival rate following treatment Probably how easy it is to get on it and start it without waiting and money. Participant 50 Number one, if it is going to prolong my life. Participant 9 Whether I would have to…the cost of it. The cost, time off work. Participant 66 I was thinking about will I be here in five years? Will I be here in 10? Like I'm 55 or 56 then. How's that like? Should I give up? My family said, "Don't give up. You

Lung Cancer 2018 Australian PEEK Study 118 Section 4 Participant describes considering their family and the Well, the things I took into consideration was my impact on them family of course, my wonderful wife. I've got a son who's go [IDENTIFIABLE INFORMATION REMOVED] I Probably the number one consideration need to want to see him better. Participant 17 know, hasn't always been easy, would be that I've only got one child…She's an only child as I said…I Yes, the only importance is my family. I guess I just want to be here a little while longer, I think. want to be around. Participant 76 Participant 6

Lung Cancer 2018 Australian PEEK Study 119 Section 4 Table 4.2: Considerations when making decisions All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes considering the side effects 28 35.00 3 17.65 9 52.94 16 34.78 12 35.29 Participant describes considering the efficacy/ evidence 19 23.75 2 11.76 6 35.29 11 23.91 8 23.53 Participant describes considering quality of life 18 22.50 4 23.53 3 17.65 11 23.91 7 20.59 Participant follows the advice of their specialist 17 21.25 5 29.41 0 0.00 12 26.09 5 14.71 Participant describes considering the survival rate following treatment 14 17.50 4 23.53 1 5.88 9 19.57 5 14.71 Participant describes considering the cost of the treatment 10 12.50 0 0.00 3 17.65 7 15.22 3 8.82 Participant describes considering their family and 10 12.50 4 23.53 1 5.88 5 10.87 5 14.71 the impact on them All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes considering the side 28 35.00 8 36.36 8 33.33 12 35.29 14 33.33 14 36.84 effects Participant describes considering the efficacy/ evidence 19 23.75 5 22.73 6 25.00 8 23.53 11 26.19 8 21.05 Participant describes considering quality of 18 22.50 6 27.27 5 20.83 7 20.59 8 19.05 10 26.32 life Participant follows the advice of their 17 21.25 3 13.64 9 37.50 5 14.71 7 16.67 10 26.32 specialist Participant describes considering the survival rate following treatment 14 17.50 6 27.27 3 12.50 5 14.71 8 19.05 6 15.79 Participant describes considering the cost of the treatment 10 12.50 6 27.27 1 4.17 3 8.82 5 11.90 5 13.16 Participant describes considering their 10 12.50 2 9.09 3 12.50 5 14.71 5 11.90 5 13.16 family and the impact on them All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes considering the side effects 28 35.00 18 37.50 10 31.25 8 22.22 20 45.45 Participant describes considering the efficacy/ evidence 19 23.75 11 22.92 8 25.00 7 19.44 12 27.27 Participant describes considering quality of life 18 22.50 10 20.83 8 25.00 7 19.44 11 25.00 Participant follows the advice of their specialist 17 21.25 8 16.67 9 28.13 10 27.78 7 15.91 Participant describes considering the survival rate following treatment 14 17.50 8 16.67 6 18.75 5 13.89 9 20.45 Participant describes considering the cost of the treatment 10 12.50 7 14.58 3 9.38 3 8.33 7 15.91 Participant describes considering their family and 10 12.50 4 8.33 6 18.75 2 5.56 8 18.18 the impact on them

Lung Cancer 2018 Australian PEEK Study 120 Section 4 Table 4.2: Considerations when making decisions (continued) All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes considering the 28 35.00 25 38.46 3 20.00 7 17.50 21 52.50 21 42.00 7 23.33 side effects Participant describes considering the efficacy/ evidence 19 23.75 15 23.08 4 26.67 4 10.00 15 37.50 13 26.00 6 20.00 Participant describes considering 18 22.50 16 24.62 2 13.33 10 25.00 8 20.00 12 24.00 6 20.00 quality of life Participant follows the advice of their 17 21.25 13 20.00 4 26.67 9 22.50 8 20.00 10 20.00 7 23.33 specialist Participant describes considering the survival rate following treatment 14 17.50 11 16.92 3 20.00 9 22.50 5 12.50 9 18.00 5 16.67 Participant describes considering the cost of the treatment 10 12.50 7 10.77 3 20.00 3 7.50 7 17.50 5 10.00 5 16.67 Participant describes considering their 10 12.50 7 10.77 3 20.00 5 12.50 5 12.50 5 10.00 5 16.67 family and the impact on them

40.00

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00 Side effects Efficacy QOL Follows specialist Survival rate Cost Family impact Figure 4.2: Considerations when making decisions

Lung Cancer 2018 Australian PEEK Study 121 Section 4

Changes in decision-making Participant describes decision making not changing, primarily because they have always considered There were 41 participants (51.25%) that felt as options and been assertive in making their own thought the way they made decisions about decisions. treatment had changed over time, and 31 participants (38.75%) that described decision making not No. Not at all. I make decisions, and I had other changing. This was primarily because they had always people speak to me and I said, "Well, this is my considered options and been assertive in decision- decision. It's nothing to do with my wife. She's a making. There were four participants (5.00%) that great person, but this is a decision I have to make for described not ever having a choice, and therefore what I think is best for myself, and that's what we're could not say whether they had changed the way they going to do." That was because of the cannabis oil. made decisions, and four participants (5.00%) that Participant 25 were unsure. No, I still do all the research. Once I know what I'm

Changed Not changed No choice No response or unsure facing with the new treatments and stuff like that. I do all the research and-- Like at one point, I was thinking about cannabis oil and that's all fine if 5% 5% you're having chemo and radiation but apparently, in regards to immunotherapy, it actually worth the benefits. My doctor actually said to me, it wouldn't 51% need to pee but I've done my own research and these 39% great articles that I've found that says it does. Participant 26

I don't think so. I would still pick the treatment that would give me a good quality of life. Of course, I Figure 4.3: Does decision-making change over time? would also take into consideration whether that's (Percentage of all participants) going to prolong my life because obviously all of us with that kind of diagnosis want to live as long as possible. If I run out of options and I no longer have Of those participants that felt as though the way they that choice, then yes, I would have to take the option made decisions had changed, 25 participants (31.25% of not being able to have the comfort of just being of the general population) attributed this change to able to function in a normal daily basis, so yes, if being more informed, and eight participants (10.00% that's what it takes to live. Participant 36 of the general population) attributed this to placing more emphasis on how treatment will impact aspects I think we probably would continue making them the of their life. way that we have made them. I do an awful lot of research online. I'm a member of quite a few groups In relation to sub-group variations, participants with that give me a lot of information. The doctors that brain metastases (68.18%) described decision-making I've had I've found are very, often and the people changing more frequently than the general population appear to be very often and very helpful. You needed (51.25%), while those with other metastases (29.17%) these I suppose more older school doctors that are described this less frequently. Likewise, participants like, "You don't need to worry about that. You don't with brain metastases (18.18%) described decision- need to know about that." We haven't encountered making not changing less frequently than the general that. I'm also a member of a support group, and population (38.75%), while those with other there is a lot of information there, and a lot of people metastases (62.50%) and more pain (50.00%) doing different treatments. I'm aware of a lot of described this more frequently. other things that are happening out there. A lot of these people are onto different trials, so you're aware of what's out there. Participant 57

Lung Cancer 2018 Australian PEEK Study 122 Section 4 Participant describes not have any choice in that's quite a reasonable cause of action." then I'll treatment pursue that. Participant 68

Well this is our only treatment so far. This is our first Participant describes decision making changing as that, so we haven't really had to make that sort of they consider how it will impact aspects of their life decision yet. Participant 50 Definitely when I first began I guess I was very Yes. Really I don't have any choice. That’s the fact of frightened and I was just like, "Give me anything and it. I don’t have any choice because the treatment everything." Then after having chemotherapy for that’s available to me is lifesaving and it's my only quite a period of time, it's not a fun ride at all. I've option. Participant 72 also had radiation as well and I had some more radiation this year. Knowing also the really long- I haven't had to make any other decisions since then term side effects of chemotherapy and radiation is because I'm still on the same trial with the same terrible because I have neuropathy, hot and cold drug. I suppose yes, I haven't really had to make any flashes all the time, temperatures and these are long more decisions yet. Participant 75 term side effects. It's not as a you just get the treatment. The treatment comes with a lot tackle on Participant describes decision making changing as the side as well over a long period of time. No one they are more informed ever really talks to us about the long-- No one ever spoke to us about the long-term effects. Participant I now try to at least learn a bit more about it. At first 34 I was just a bit naive. I was diagnosed in October 2017 it hasn’t been a long time. Unfortunately, for Gosh. My decisions? Yes. The answer is yes. Well, in me I wasn’t on the targeted medicine, it didn’t work general there is all these clichés but they are so true for me for very long. I haven’t had the chance to when you're unwell. Life is precious, life is short, it's learn a lot about the proper cancer that I have. It’s about making the best decisions for me and my loved hard to make decisions when you don’t know a great ones and what that will look like and how that deal about something. Participant 35 affects everyone and me first and foremost. Taking into consideration my lifespan and what I can and It's different now because I know so much more and can't do and what I can get in now to whilst do well I'm more likely to ask more questions, obviously. and maintain my health at the moment. Participant Much more so because I've learned so much and I 61 have to say that most of what I learned about lung cancer is from my own learnings, not from Probably changed because I think when I first went information that was given to me by medical people. through it I was very naive and I also didn't consider They tend to holdback, rather than give a lot of getting second opinions. I just sort of, went along information. Participant 59 with, whoever was recommended at the time. Now, my main concern is how it affects my quality of life, Yes. I think it has, obviously the initial way of financial, even down to how it all affects my thought is just go along with whatever the partners, whether you need someone to look after oncologist and the specialist tell you to do. But you or be there with you. Participant 66 nowadays I certainly don't do that. I'll listen to their advice and then I'll do my own research and I'll go back to them with suggestions and if they say, "Yes,

Lung Cancer 2018 Australian PEEK Study 123 Section 4 Table 4.3: Does decision-making change over time? Does decision-making change over time All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes decision-making changing 41 51.25 10 58.82 9 52.94 22 47.83 19 55.88 Participant describes decision-making not changing, primarily because they have always 31 38.75 6 35.29 6 35.29 19 41.30 12 35.29 considered options and been assertive in making their own decisions. Participant describes not have any choice in 4 5.00 0 0.00 1 5.88 3 6.52 1 2.94 treatment No response or unsure 4 5.00 1 5.88 1 5.88 2 4.35 2 5.88

Participant describes decision-making changing as they are more informed 25 31.25 5 29.41 5 29.41 15 32.61 10 29.41 Participant describes decision-making changing as they 8 10.00 2 11.76 2 11.76 4 8.70 4 11.76 consider how it will impact aspects of their life Does decision-making change over time All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes decision-making 41 51.25 15 68.18 7 29.17 19 55.88 20 47.62 21 55.26 changing Participant describes decision-making not changing, primarily because they have 31 38.75 4 18.18 15 62.50 12 35.29 15 35.71 16 42.11 always considered options and been assertive in making their own decisions. Participant describes not have any choice in 4 5.00 2 9.09 1 4.17 1 2.94 4 9.52 0 0.00 treatment No response or unsure 4 5.00 1 4.55 1 4.17 2 5.88 3 7.14 1 2.63

Participant describes decision-making changing as they are more informed 25 31.25 10 45.45 5 20.83 10 29.41 12 28.57 13 34.21 Participant describes decision-making changing as they consider how it will impact aspects of 8 10.00 2 9.09 2 8.33 4 11.76 4 9.52 4 10.53 their life Does decision-making change over time All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes decision-making changing 41 51.25 26 54.17 15 46.88 18 50.00 23 52.27 Participant describes decision-making not changing, primarily because they have always 31 38.75 15 31.25 16 50.00 15 41.67 16 36.36 considered options and been assertive in making their own decisions. Participant describes not have any choice in 4 5.00 4 8.33 0 0.00 1 2.78 3 6.82 treatment No response or unsure 4 5.00 3 6.25 1 3.13 2 5.56 2 4.55

Participant describes decision-making changing as they are more informed 25 31.25 14 29.17 11 34.38 10 27.78 15 34.09 Participant describes decision-making changing as they 8 10.00 6 12.50 2 6.25 3 8.33 5 11.36 consider how it will impact aspects of their life

Lung Cancer 2018 Australian PEEK Study 124 Section 4 Table 4.3: Does decision-making change over time? (continued)

Does decision-making change over All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low time remote school SEIFA n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes decision-making 41 51.25 33 50.77 8 53.33 20 50.00 21 52.50 25 50.00 16 53.33 changing Participant describes decision-making not changing, primarily because they have always considered options and 31 38.75 25 38.46 6 40.00 14 35.00 17 42.50 19 38.00 12 40.00 been assertive in making their own decisions. Participant describes not have any 4 5.00 3 4.62 1 6.67 3 7.50 1 2.50 2 4.00 2 6.67 choice in treatment No response or unsure 4 5.00 4 6.15 0 0.00 3 7.50 1 2.50 4 8.00 0 0.00

Participant describes decision-making changing as they are more informed 25 31.25 21 32.31 4 26.67 14 35.00 11 27.50 15 30.00 10 33.33 Participant describes decision-making changing as they consider how it will 8 10.00 5 7.69 3 20.00 1 2.50 7 17.50 4 8.00 4 13.33 impact aspects of their life

60.00

50.00

40.00

30.00

20.00

10.00

0.00 Changed Not changed No choice No response or Changed - Changed - unsure informed impacting life Figure 4.4: Does decision-making change over time? (Percentage of all participants)

Lung Cancer 2018 Australian PEEK Study 125 Section 5 Section 5 Treatment and health service provision

Lung Cancer 2018 Australian PEEK Study Section 5

Section 5: Experience of treatment

Discussions about Clinical Trials

Treatments experienced

Surgery

Chemotherapy

127 Lung Cancer 2018 Australian PEEK Study Section 5 The average quality of life for those who had cisplatin was 2.17, in the “life was distressing range”. The average effectiveness was rated at 3.33, in the moderately effective range. The most commonly reported side effects were fatigue (N=19, 79.17%), nausea and vomiting (N=16, 66.67%), “chemo brain” (N=16, 66.67%), and constipation (N=16, 66.67%). The average quality of life for those that had carboplatin was 3.00, in the ‘somewhat distressing’ range. The average effectiveness was 3.11, in the moderately effective range.

Immunotherapy

Radiotherapy

Clinical trial treatments

Impact of lung cancer on quality of life

128 Lung Cancer 2018 Australian PEEK Study Section 5 Mild side effects

The most common description of mild side effects were those that do not greatly impact activities of daily living (n=39; 48.75%). This was the only major theme identified within this question. In relation to specific side effects, not all participants described a single side effect that they considered to be mild, however, for those that did the most common was nausea (11.25%0, followed by fatigue (10.00%), itches or rash 8.75%) and diarrhea (6.25%).

Severe side effects

The most common description of severe side effects were those that impact the ability to do everyday things/everyday living (n=29, 36.25%). There were 11 participants (13.75%) described fatigue/exhaustion as a severe side effect and 11 participants (13.75%) that described pain as a severe side effect. There were 13 participants (16.25%) that described either nausea n=8; 10.00%) or vomiting )n=5; 6.25%) as a severe side effect.

Adherence to medications Participants were asked in the online questionnaire, if in general, if they were good at taking medicine and sticking to it. The majority of participants were good at sticking to treatments all of the time (N=55, 68.75%) and the remaining were good at sticking to treatments most of the time (N=22, 27.50%), or some of the time (N=3, 3.75%). No participants felt they were never, rarely or never good at sticking to treatments.

In the structured interviews, the most common theme was described was continuing on treatment as long as it is effective/evidence that it is not working (n=27; 33.75%), and this was followed by taking the advice of their clinician (n=24; 30.00%). There were 20 participants (25.00%) that described needing to see a test or scan results and eight (10.00%) that described continuing on treatment as long as side effects are tolerable.

Impact of treatment: what needs to change to know treatment is working

The most common description was needing to needing to see test or scan results (including reduction in tumour size) (n=34; 42.50%) and this was followed by needing to see a decrease in side effects of treatment (n=23; 28.75%). There were 12 participants (15.00%) that described needing evidence of stable disease and seven participants (8.75%) that described trusting their clinician.

Use of complementary therapies

The most common theme was that the participant described not using complementary therapies (n=20; 25.00%). The most common therapies that were considered complementary and described by participants were vitamins and supplements (n=19; 23.75%). There were nine participants (11.25%) that described having a specific diet, and eight (10.00%) that described seeing a naturopath.

Preference for treatment

The majority of participants (n=63; 78.75%) described a preference for taking a pill at home and in contrast, 13 participants (16.25%) described a preference for chemotherapy in hospital. For those that described a preference for a pill at home, the main reasons were the reduced impact on everyday living (n=26; 32.50%), ease of administration (n=13; 16.25%) and because hospitals tend to be depressing (n=13; 16.25%). For those that described a preference for hospital, the main reason was because they can be monitored and tested (n=10; 12.50%).

129 Lung Cancer 2018 Australian PEEK Study Section 5 Support needed for treatment (pill form) at home

The most common supported described was needing someone to call on the telephone who is available and responsive at all times (n=30; 37.50%) and 10 participants (12.50%) that describes being well informed and having their own support services, and are confident to take medication at home. There were eight participants (10.00%) that described being concerned about managing side effects, eight participants (10.00%) that described needing clear instructions and what to expect in relation to side effects, and eight participants (10.00%) that described needing to be able to access their oncologist.

Service provision and affordability

Participants answered questions about access to health services in the online questionnaire. The main physician treating participants for lung cancer were medical oncologists (N=63, 79.75%), others were treated mainly by radiation oncologists (N=7, 8.86%), surgeons (N=5, 6.33%), lung specialists (N=2, 2.53%) and GPs (N=2, 2.53%).

Participants had access to a medical oncologist (N=75, 93.75%), a general practitioner (N=72, 90.00%), a radiation oncologist (N=50, 62.50%), a surgeon (N=41, 51.25%), and counselling or psychological support (N=41, 51.25%) for the treatment of their lung cancer.

Health care system

The majority of patients had private healthcare insurance (N=51, 63.75%), 42 (52.50%) participants were treated as public patients, 22 (27.50%) as private patients and 16 (20.00%) as equally public and private patients. The majority of participants were treated in the public hospital system (N=48, 60.00%).

Treated with respect during treatment

The majority of participants indicated that they had been treated with respect throughout their treatment (N=51, 63.75%), 25 (31.25%) participants felt they had been treated with respect with the exception of one or two occasions, and four (5.00%) participants felt they had not been treated with respect throughout their treatment.

Lung cancer cost implications

Participants were asked about costs/affordability issues associated with lung cancer. The majority of participants have never missed medical appointments due to cost (N=66, 82.50%), seven participants (8.75%) rarely, and seven participants (8.75%) sometimes missing appointments due to cost.

Most participants were able to fill prescriptions all the time (N=67, 83.75%), with eight participants (10.00%) rarely unable to fill prescription due to cost, and five participants (6.25%) sometimes unable to fill prescriptions due to cost.

Participants were asked if as a result of their lung cancer diagnosis if they ever had trouble paying for basic necessities such as housing, food and electricity. Twenty-three participants (28.75%) found it somewhat difficult to extremely difficult to pay for basic necessities, while 30 (37.50%) did not find it difficult at all.

Nine participants (11.25%) have had to pay for additional carers for themselves or their family members as a result of their diagnosis with lung cancer.

The estimated monthly expenses due to lung cancer was reported, four participants (6.56%) had no out of pocket expenses, 14 (22.95%) spent under $100 a month and 21 (34.34%) spent between $101 and $500, and 14 participants (22.96%) spent more than $501.

130 Lung Cancer 2018 Australian PEEK Study Section 5 Employment/income changes due to lung cancer

The work status for a number of participants changed due to their diagnosis with lung cancer. A number of participants experienced a drop in income through quitting work (N=27, 33.75%), reducing hours (N=19, 23.75%), or take leave without pay (N=15, 18.75%). Thirteen (16.25%) participants accessed their superannuation early due to lung cancer. Five participants (6.25%) had no changes to employment status, and 19 (23.75%) were not employed or were retired when they were diagnosed with lung cancer.

The work status changed due to the lung cancer diagnosis for some of the partners or main carers of participants . A drop in income for partners and main carers was due to quitting work (N=4, 5.13%), a reduction in working hours (N=9, 11.54%), or from taking leave without pay (N=8, 10.26%). Sixteen (20.51%) partners and main carers were retired or not employed at time of lung cancer diagnosis, and 32 (41.03%) had no change to their employment status.

Participants indicated the estimated monthly income reduction due to lung cancer, 24 participants (32.00%) lost more than $1000 a month, and the income of seven (6.67%) participants was reduced by more than $5000.

131 Lung Cancer 2018 Australian PEEK Study Section 5

Clinical Trials 70 Discussions about Clinical Trials 60

In this PEEK study, 32.50% of all participants (N=26) 40 describe not being spoken to about clinical trials, 17

Percent 30 (21.25%) participants brought up the topic with their doctor, and the doctors of 37 (46.25%) participants 20 brought up the topic of clinical trials. 10 0 I have not participated in a I have not participated in a I have participated in a Table 5.1: Discussions about clinical trials clinical trial and do not clinical trial but would like clinical trial want to to if there is one for me Clinical trials discussion N=80 Percent Figure 5.2: Participation in clinical trials I brought up the topic of clinical trials with my 17 21.25 doctor for discussion My doctor brought up the topic of clinical trials Treatments experienced 37 46.25 for discussion Participants were asked in the questionnaire to identify No one has ever spoken to me about clinical 26 32.50 trials the treatments that they had experienced. Forty-five (56.25%) had immunotherapy or targeted therapy, 44

50 (55.00%) participants had chemotherapy, 42 (52.50%) 45 had radiotherapy and 35 (43.75%) had surgery. 40 35 Table 5.3: Treatment overview 30 25 Treatment N=80 Percent

Percent 20 15 Surgery 35 43.75 10 Chemotherapy 44 55.00 5 0 Radiotherapy 42 52.50 I brought up the topic of My doctor brought up the No one has ever spoken to clinical trials with my topic of clinical trials for me about clinical trials Immunotherapy 45 56.25 doctor for discussion discussion Figure 5.1: Discussions about clinical trials 60.00

Participation in Clinical Trials 50.00 Twenty-three (28.75%) participants have taken part in a clinical trial, and 50 (62.50%) participants have not 40.00 taken part in a clinical trial but would like if one was suitable for them. Seven (8.75%) participants have not 30.00 Percent taken part and do not want to. 20.00

Table 5.2: Participation in clinical trials 10.00

Participation in clinical trials N=80 Percent 0.00 I have not participated in a clinical trial and do Surgery Chemotherapy Radiotherapy Immunotherapy 7 8.75 not want to Figure 5.3: Treatment overview I have not participated in a clinical trial but 50 62.50 would like to if there is one for me Surgery I have participated in a clinical trial 23 28.75 Thirty-five (43.75%) participants had surgery to treat or manage their lung cancer. Excluding biopsies, more than three quarters of those that had operations had a single operation (N=27, 77.14%%), four (11.43%) participants had two operations, two (5.71%) participants had three operations, and two (5.71%) participants had four or more operations. The most common procedure was a lobectomy (N=17, 35.42%), followed by removal of lymph nodes (N=14, 29.17%) 132 Lung Cancer 2018 Australian PEEK Study Section 5 and wedge resection (N=10, 20.83%). The majority of in the ‘Life was distressing’ range. A second follow-up operations were open (N=35, 70.83%). question was asked in relation to how effective the participant felt the procedure was on a scale of 1 to 5 Participants were asked (within the questionnaire), to (with 1 being ineffective and 5 being very effective). rate their quality of life on a scale of 1 to 7, following Effectiveness scores ranged from 2 to 5, with a mean their operation (with 1 being ‘Life was very distressing score of 4.1, in the ‘Effective’ range. and 7 being ‘Life was great’). Quality of life scores ranges from 1 to 4, with a mean score of 1.90, that is,

Table 5.4: Surgery overview

Number of operations Count (N=35) Percent 1 27 77.14 2 4 11.43 3 2 5.71 4 or more 2 5.71 Operation Count (N=48 operations) Wedge resection 10 20.83 Remove lymph nodes 14 29.17 Lobectomy 17 35.42 Bilobectomy 1 2.08 Pnemonectomy 6 12.50 Method Key hole 14 29.17 Open 34 70.83 Quality of life Mean 1.90 Life is/was distressing range Range 1 to 4 Life is/was very distressing to average range Side effects experienced by patient across all operations Pain 24 68.573 Fatigue 19 54.39 Breathlessness 19 54.39 Long term side effects 15 42.86 Generally unwell 14 40.00 Sick/nausea 8 22.86 Swelling/redness wound 7 20.00 Hot and cold 3 8.57 Aggressive scar tissue regrowth 1 2.86 Pericardial effusion 1 2.86 Fractured ribs 1 2.86 Surgical emphysema 1 2.86 Shivering 2 5.71 None 1 2.86 Effectiveness Average 4.1 Effective range Range 2 to 5 Somewhat effective to very effective range

Lung Cancer 2018 Australian PEEK Study 133 Section 5 By procedure type, those who had a wedge resection those that had a lobectomy was 3.88, in the reported an average quality of life score of 1.60, and moderately effective range. those who had a lobectomy reported an average score Pain was the most commonly reported side effect from of 1.88, both in the life was very distressing range. wedge resections (N=7, 70.00%), lymph node Those who had a lymph node removal reported an resections (N=13, 92.86%) and lobectomies (N=14, average quality of life score of 2.07, in the life is 82.35), followed by fatigue from wedge resections distressing range. The average effectiveness was (N=4, 40.00%), lymph node resections (N=10, 71.43%) reported as 4.10 for those that had a wedge resection, and lobectomies (N=13, 76.47), and breathlessness and as 4.21 for those with lymph node removed, both from wedge resections (N=5, 50.00%), lymph node in the effective range. The average effectiveness of resections (N=9, 64.29%) and lobectomies (N=11, 64.71).

Table 5.5: Surgery quality of life, side effects and effectiveness Count Count Count Surgery Percent Percent Percent Count (n=1) Percent Count (N=6) Percent (N=10) (N=14) (N=17) Operation Wedge resection Remove lymph nodes Lobectomy Bilobectomy Pnemonectomy 10 14 17 1 6 Number last 5 years 5 50.00 10 71.43 12 70.59 0 0.00 1 16.67 Date range 2007 - 2017 2010 - 2018 2003 - 2018 2007 2007 to 2015 Type Key hole 3 30.00 2 14.29 6 35.29 1 100.00 2 33.33 Open 7 70.00 12 85.71 11 64.71 0 0.00 4 66.67 Quality of life Mean score 1.60 2.07 1.88 1.00 100.00 2 33.33 Range 1 to 3 1 to 4 1 to 4 1 1 to 3 Side effects Pain 7 70.00 13 92.86 14 82.35 1 100.00 5 83.33 Fatigue 4 40.00 10 71.43 13 76.47 1 100.00 6 100.00 Breathlessness 5 50.00 9 64.29 11 64.71 1 100.00 6 100.00 Long term side effects 3 30.00 8 57.14 10 58.82 0 0.00 3 50.00 Generally unwell 2 20.00 4 28.57 10 58.82 1 100.00 3 50.00 Sick/nausea 0 0.00 3 21.43 8 47.06 0 0.00 0 0.00 Swelling/ redness wound 1 10.00 3 21.43 6 35.29 0 0.00 0 0.00 Hot and cold 0 0.00 2 14.29 3 17.65 0 0.00 0 0.00 Aggressive scar tissue regrowth 0 0.00 1 7.14 1 5.88 0 0.00 0 0.00 Pericardial effusion 0 0.00 1 7.14 0 0.00 0 0.00 1 16.67 Fractured ribs 1 10.00 1 7.14 1 5.88 0 0.00 0 0.00 Surgical emphysema 0 0.00 1 7.14 0 0.00 0 0.00 0 0.00 Shivering 0 0.00 0 0.00 2 11.76 0 0.00 0 0.00 None 0 0.00 1 7.14 0 0.00 0 0.00 0 0.00 Effectiveness Mean score 4.10 4.21 3.88 4.00 4.50 Range 2 to 5 2 to 5 2 to 5 4 4 to 5

Chemotherapy moderately effective to effective range, and the quality Forty-four participants (55.00%) reported having of life while on chemotherapy was rated as in the “life chemotherapy to treat or manage lung cancer. The was distressing” range. Fatigue was the most most common types of chemotherapy reported were commonly reported side effect of chemotherapy, with cisplatin (N=24, 54.45%) and carboplatin (N=21, 38 (86.36%) participants that had chemotherapy 47.73%). Participants had between one and seven reporting it as a side effect. “Chemo brain” was the regimens, with a median of two regimens. The next most commonly reported side effect (N=28, effectiveness of chemotherapy overall was rated in the 63.64%), followed by constipation (N=26, 59.09%).

Lung Cancer 2018 Australian PEEK Study 134 Section 5

Table 5.6: Chemotherapy overview

Number (N=44) Percent Number of chemotherapy regimens 1 to 7 Median 2 Mean 2.56 Quality of life range Range 1 to 6 Median 2 Life is distressing range Mean 2.64 Side effects (by patient regimens combined) Anaemia 14 31.82 Anorexia 1 2.27 Appetite changes 21 47.73 Change in libido/sexual function 17 38.64 Chemo brain 28 63.64 Constipation 26 59.09 Diarrhoea 10 22.73 Easy bruising/bleeding 8 18.18 Fatigue 38 86.36 Fertility problems 2 4.55 Hair loss 23 52.27 Hearing difficulties/tinnitus 1 2.27 Infection 7 15.91 Instant Menopause 1 2.27 Mood changes 15 34.09 Mouth, tongue, throat problems 13 29.55 Nausea and vomiting 25 56.82 Nerve and muscle symptoms 25 56.82 Skin and nail changes 12 27.27 Urine and bladder changes/kidney 1 2.27 problems Neutropenic 2 4.55 Weight changes 17 38.64 No side effects 5 11.36 Effectiveness Range 1 to 5 Median 4 Effective range Mean 3.17 Moderately effective range

Lung Cancer 2018 Australian PEEK Study 135 Section 5 The average quality of life for those who had cisplatin average quality of life for those that had carboplatin was 2.17, in the “life was distressing range”. The was 3.00, in the ‘somewhat distressing’ range. The average effectiveness was rated at 3.33, in the average effectiveness was 3.11, in the moderately moderately effective range. The most commonly effective range. An overview of chemotherapy by reported side effects were fatigue (N=19, 79.17%), regimen including quality of life, side effects and nausea and vomiting (N=16, 66.67%), “chemo brain” effectiveness is presented in Table 5.7. (N=16, 66.67%), and constipation (N=16, 66.67%). The

Table 5.7: Chemotherapy quality of life, side effects and effectiveness Carboplatin Vinorelbine Pemetrexed Cisplatin (N=24) Etoposide (N=8) (n=21) (N=11) (N=11) Quality of Life Mean 2.17 3.00 2.00 3.18 2.75 Range 1 to 4 1 to 6 1 to 3 2 to 6 1 to 4 Side effects Anaemia 6 (25.00%) 6 (28.57%) 3 (27.27%) 2 (18.18%) 3 (37.50%) Anorexia 1 (4.17%) 0 0 0 0 Appetite changes 14 (58.33%) 10 (47.62%) 6 (54.55%) 4 (36.36%) 4 (50.00%) Change in libido/sexual function 9 (37.50%) 8 (38.10%) 2 (18.18%) 3 (27.27%) 6 (75.00%) Chemo brain 16 (66.67%) 12 (57.14%) 6 (54.55%) 6 (54.55%) 5 (62.50%) Constipation 16 (66.67%) 13 (61.90%) 6 (54.55%) 6 (54.55%) 6 (75.00%) Diarrhoea 4 (16.67%) 7 (33.33%) 0 2 (18.18%) 2 (25.00%) Easy bruising/bleeding 4 (16.67%) 5 (23.81) 1 (9.09%) 1 (9.09%) 2 (25.00%) Fatigue 19 (79.17%) 15 (71.43%) 7 (63.64%) 9 (81.82%) 6 (75.00%) Fertility problems 2 (8.33%) 0 1 (9.09%) 0 1 (12.50%) Hair loss 11 (45.83%) 13 (61.90%) 2 (18.18%) 2 (18.18%) 8 (100.00%) Hearing difficulties/tinnitus 1 (4.17%) 0 0 0 0 Infection 4 (16.67%) 4 (19.05%) 1 (9.09%) 1 (9.09%) 1(12.50%) Instant Menopause 1 (4.17%) 0 0 0 1(12.50%) Mood changes 9 (37.50%) 5 (23.81) 3 (27.27%) 1 (9.09%) 5 (62.50%) Mouth, tongue, throat problems 9 (37.50%) 6 (28.57%) 3 (27.27%) 3 (27.27%) 3 (37.50%) Nausea and vomiting 16 (66.67%) 12 (57.14%) 5 (45.45%) 5 (45.45%) 5 (62.50%) Nerve and muscle symptoms 15 (62.50%) 8 (38.10%) 5 (45.45%) 4 (36.36%) 5 (62.50%) Skin and nail changes 7 (29.17%) 7 (33.33%) 1 (9.09%) 4 (36.36%) 1 (12.50%) Urine and bladder changes/kidney problems 1 (4.17%) 0 0 0 0 Neutropenic 1 (4.17%) 0 1 (9.09%) 0 0 Weight changes 11 (45.83%) 8 (38.10%) 6 (54.55%) 3 (27.27%) 3 (37.50%) No side effects 0 2 (9.52%) 1 (9.09%) 0 0 Effectiveness Mean 3.33 3.11 3.09 3.55 3.25 Range 1 to 5 1 to 5 1 to 5 1 to 5 1 to 5

Lung Cancer 2018 Australian PEEK Study 136 Section 5

Table 5.7 (Continued): Chemotherapy quality of life, side effects and effectiveness

Etoposide and Gemcitabine Pemetrexed and Carboplatin and cisplatin (N=7) GemCarbo (N=7) Paclitaxel (N=6) (N=4) cisplatin (N=3) etoposide (N=3) Quality of Life Mean 2.43 2.29 3.83 3.25 3.00 1.67 Range 1 to 4 1 to 4 2to 6 1 to 6 2 to 4 1 to 2 Side effects Anaemia 3 (42.85%) 3 (42.85%) 1 (16.67%) 2 (50.00%) 0 3 (100.00%) Anorexia 0 0 0 0 0 0 Appetite changes 6 (85.71%) 4 (57.14%) 1 (16.67%) 3 (75.00%) 2 (66.67%) 3 (100.00%) Change in libido/sexual function 6 (85.71%) 4 (57.14%) 3 (50,00%) 2 (50.00%) 0 3 (100.00%) Chemo brain 5 (71.43%) 6 (85.71%) 3 (50.00%) 3 (75.00%) 3 (100.00%) 3 (100.00%) Constipation 5 (71.43%) 1 (14.29%) 3 (50.00%) 2 (50.00%) 1 (33.33%) 3 (100.00%) Diarrhoea 2 (28.57%) 3 (42.85%) 1 (16.67%) 1 (25.00%) 0 1 (33.33%) Easy bruising/bleeding 1 (14.29%) 4 (57.14%) 0 2 (50.00%) 0 1 (33.33%) Fatigue 6 (85.71%) 7 (100.00%) 3 (50.00%) 4 (100.00%) 3 (100.00%) 3 (100.00%) Fertility problems 1 (14.29%) 0 0 0 0 0 Hair loss 7 (100.00%) 4 (57.14%) 4 (66.67%) 3 (75.00%) 1 (33.33%) 2 (66.67%) Hearing difficulties/tinnitus 0 0 0 0 0 0 Infection 1 (14.29%) 0 0 1 (25.00%) 0 0 Instant Menopause 1 (14.29%) 0 0 0 0 0 Mood changes 5 (71.43%) 3 (42.85%) 2 (33.33%) 1 (25.00%) 0 3 (100.00%) Mouth, tongue, throat problems 2 (28.57%) 2 (28.57%) 2 (33.33%) 1 (25.00%) 2 (66.67%) 2 (66.67%) Nausea and vomiting 4 (57.14%) 5 (71.43%) 2 (33.33%) 3 (75.00%) 2 (66.67%) 3 (100.00%) Nerve and muscle symptoms 5 (71.43%) 6 (85.71%) 1 (16.67%) 2 (50.00%) 0 2 (66.67%) Skin and nail changes 1 (14.29%) 4 (57.14%) 1 (16.67%) 2 (50.00%) 1 (33.33%) 1 (33.33%) Urine and bladder changes/kidney problems 1 (14.29%) 0 0 0 0 0 Neutropenic 0 0 0 0 0 0 Weight changes 4 (57.14%) 3 (42.85%) 2 (33.33%) 2 (50.00%) 1 (33.33%) 3 (100.00%) No side effects 0 0 1 (16.67%) 0 0 0 Effectiveness Mean 3.14 2.57 3.00 2.33 3.33 3.33 Range 1 o 5 1 to 4 2 to 4 1 to 4 1 to 5 2 to 4

Immunotherapy the effective range, and the average quality of life while on immunotherapy was 4.86 in the “life was Forty-five participants (56.25%) reported having good” range. Fatigue was the most commonly immunotherapy to treat or manage lung cancer. The reported side effect of immunotherapy, with 40 most common types of immunotherapy reported were (88.89%) participants that had immunotherapy Tarceva (N=17, 37.78%) and Aletinib (N=16, 35.56%). reporting it as a side effect. “Diarrhoea” was the next Participants had between one and four regimens, with most commonly reported side effect (N=34, 75.56%), an average of 1.66 regimens. The average followed by nausea and vomiting (N=26, 57.78%). effectiveness of immunotherapy overall was 3.94, in

Lung Cancer 2018 Australian PEEK Study 137 Section 5 Table 5.8: Immunotherapy overview

Number Percent Immunotherapy 45 56.25 Number of immunotherapy regimens Range 1 to 4 Mean 1.66 QOL Range 2 to 7 Mean 4.86 Life was average Side effects (by patient regimens combined) Appetite changes 13 28.89 Arthralgia 2 4.44 Arthritic symptoms 2 4.44 Changes libido/sexual function 4 8.89 Chemo brain 9 20.00 Constipation 19 42.22 Diarrhoea 34 75.56 Easy bruising/bleeding 4 8.89 Eye changes 1 2.22 Fasciitis 4 8.89 Fatigue 40 88.89 Hair loss 8 17.78 Heavy arms & legs 3 6.67 High cholesterol level 4 8.89 Infection 6 13.33 Liver function 4 8.89 Mood changes 6 13.33 Mouth, tongue and throat problems 8 17.78 Myalgia 1 2.22 Nausea and vomiting 26 57.78 Nerve and muscle problems 16 35.56 Oedema 1 2.22 Pain in lower spine 1 2.22 Severe stomach cramps 3 6.67 Skin and nail changes 24 53.33 Thickened and curly eye lashes 1 2.22 Urine/bladder changes, kidney problems 1 2.22 Vision impairment] 1 2.22 Weight changes 25 55.56 No side effects 1 2.27 Effectiveness range 1 to 5 Average 3.94

Lung Cancer 2018 Australian PEEK Study 138 Section 5

The average quality of life for those who had Tarceva good” range. The average effectiveness was 4.31, in (N=17) was 4.00, in the “life was average” range. The the effective range, the most commonly reported side average effectiveness was rated at 2.88, in the effects were fatigue (N=12, 75.00%), nausea and moderately effective range. The most commonly vomiting (N=7, 43.75%) and diarrhoea (N=7, 43.75%). reported side effects were diarrhoea (N=17, 100.00%), skin and nail changes (N=17, 100.00%), and fatigue An overview of immunotherapy by regimen including (N=15, 88.24%). The average quality of life for those quality of life, side effects and effectiveness is that had Alectinib (N=16) was 5.56 ,in the ‘life was presented in Table 5.9.

Table 5.9: Immunotherapy, quality of life, side effects and effectiveness Tarceva Alectinib Crizotinib Tagrisso Certinib Immunotherapy N=17 N=16 N=12 N=9 N=7 QOL QOL range 2 to 7 5 to 7 5 to 7 4 to 6 4 to 6 QOL mean 4.00 5.56 5.55 5.55 4.71 Side effects Appetite changes 3 (17.65%) 0 3 (25.00%) 2 (22.22%) 4 (57.14%) Arthralgia 0 0 0 0 0 Arthritic symptoms 0 0 0 0 0 Changes libido/sexual function 1 (5.88%) 0 1 (8.33%) 1 (11.11%) 0 Chemo brain 2 (11.76%) 1 (6.25%) 0 2 (22.22%) 0 Constipation 8 (47.06%) 6 (37.50%) 4 (33.33%) 3 (33.33%) 1 (14.29%) Diarrhoea 17 (100.00%) 7 (43.75%) 7 (58.33%) 6 (66.67%) 7 (100.00%) Easy bruising/bleeding 2 (11.76%) 0 0 0 0 Eye changes 0 0 1 (8.33%) 0 0 Fasciitis 0 0 0 0 0 Fatigue 15 (88.24%) 12 (75.00%) 10 (83.33%) 8 (88.89%) 6 (85.71%) Hair loss 6 (35.39%) 0 0 0 0 Heavy arms & legs 0 3 (18.75%) 0 0 0 High cholesterol level 0 0 0 0 0 Infection 7 (41.18%) 0 0 0 0 Liver function 0 0 1 (8.33%) 0 2 (28.57%) Mood changes 4 (23.53%) 0 0 4 (44.44%) 0 Mouth, tongue and throat problems 5 (29.41%) 1 (6.25%) 1 (8.33%) 2 (22.22%) 0 Myalgia 0 1 (6.25%) 0 0 0 Nausea and vomiting 9 (52.94%) 7 (43.75%) 4 (33.33%) 5 (55.55%) 4 (57.14%) Nerve and muscle problems 2 (11.76%) 6 (37.50%) 0 5 (55.55%) 0 Oedema 0 1 (6.25%) 0 0 0 Pain in lower spine 0 1 (6.25%) 0 0 0 Severe stomach cramps 0 0 0 0 3 (42.86%) Skin and nail changes 17 (100.00%) 2 (12.50%) 1 (8.33%) 4 (44.44%) 0 Thickened and curly eye lashes 1 (5.88%) 0 0 0 0 Urine/bladder changes, kidney problems 1 (5.88%) 0 0 0 0 Vision impairment] 0 0 1 (8.33%) 0 0 Weight changes 8 (47.06%) 3 (18.75%) 5 (41.67%) 3 (33.33%) 5 (71.43%) No side effects 0 1 (6.25%) 0 0 0 Effectiveness Effectiveness range 1 to 5 4 to 5 4 to 5 4 to 5 2 to 5 Effectiveness mean 2.88 4.32 4.38 4.38 3.86

Lung Cancer 2018 Australian PEEK Study 139 Section 5 Table 5.9 (Continued): Immunotherapy, quality of life, side effects and effectiveness Lorlatinib Gefitinib OPDIVO Lapatinib Immunotherapy N=6 N=6 N=6 N=1 QOL QOL range 4 to 7 3 to 5 3 to 4 4 QOL mean 5.17 4.33 3.33 4.00 Side effects Side effects Appetite changes 0 1 (16.67%) 1 (16.67%) 1 Arthralgia 2 (33.33%) 1 (16.67%) 0 0 Arthritic symptoms 2 (33.33%) 1 (16.67%) 0 0 Changes libido/sexual function 0 1 (16.67%) 0 0 Chemo brain 0 2 (33.33%) 4 (66.67%) 0 Constipation 1 (16.67%) 1 (16.67%) 1 (16.67%) 1 Diarrhoea 1 (16.67%) 5 (83.33%) 1 (16.67%) 1 Easy bruising/bleeding 0 0 2 (33.33%) 0 Eye changes 0 0 0 0 Fasciitis 0 0 4 (66.67%) 0 Fatigue 3 (50.00%) 5 (83.33%) 2 (33.33%) 1 Hair loss 0 1 (16.67%) 0 0 Heavy arms & legs 0 0 0 0 High cholesterol level 4 (66.67%) 1 (16.67%) 0 0 Infection 0 0 0 0 Liver function 0 1 (16.67%) 0 0 Mood changes 0 1 (16.67%) 0 0 Mouth, tongue and throat problems 0 0 0 0 Myalgia 0 0 0 0 Nausea and vomiting 0 1 (16.67%) 1 (16.67%) 1 Nerve and muscle problems 1 (16.67%) 2 (33.33%) 3 (50.00%) 0 Oedema 0 0 0 0 Pain in lower spine 0 0 0 0 Severe stomach cramps 0 0 0 0 Skin and nail changes 3 (50.00%) 5 (83.33%) 0 0 Thickened and curly eye lashes 0 0 0 0 Urine/bladder changes, kidney problems 0 0 0 0 Vision impairment] 0 0 0 0 Weight changes 2 (33.33%) 3 (50.00%) 5 (83.33%) 0 No side effects 0 0 0 0 Effectiveness Effectiveness range 5 1 to 4 4 4 Effectiveness mean 5.17 3.00 4.00 4.00

Lung Cancer 2018 Australian PEEK Study 140 Section 5 Radiotherapy in the ‘Life was average’ range. A second follow-up question was asked in relation to how effective the Forty-two (52.50%) participants had radiation therapy participant felt the treatment was on a scale of 1 to 5 to treat or manage their lung cancer. Participants were (with 1 being ineffective and 5 being very effective). asked (within the questionnaire), to rate their quality Effectiveness scores ranged from 1 to 5, with a mean of life on a scale of 1 to 7, during the period they had score of 4.1, in the ‘Effective’ range. Fatigue was the radiotherapy (with 1 being ‘Life was very distressing most commonly reported side effect (N=32, 76.19%), and 7 being ‘Life was great’). Quality of life scores followed by skin dryness or itching (N=18, 42.86%) and ranges from 1 to 6, with a mean score of 2.95, that is, difficulty swallowing (N=17, 40.48%).

Table 5.10: Radiotherapy quality of life, side effects and effectiveness

Count Percent

Radiotherapy 42 52.50 Quality of life N=42 Mean 2.95 Range 1 to 6 Side effects N=42 Fatigue 32 76.19 Skin dryness or itching 18 42.86 Difficulty swallowing 17 40.48 Nausea and vomiting 14 33.33 Shortness of breath 11 26.19 Skin blistering or peeling 9 21.43 Dry mouth 8 19.05 Cough fever and fullness of the chest 7 16.67 Radiation fibrosis which is permanent scarring of the lungs 6 14.29 Mouth and gum sores 5 11.90 No side effects 4 9.52 Dental problems 3 7.14 A type of swelling called lymphedema 2 4.76 radiation pneumonitis 2 4.76 Shoulder stiffness 2 Bladder irritation 1 4.76 Stiffness in the jaw 1 4.76 Other side effects N=42 Oesophagitis 2 4.76 Issues with balance, vision, speech clarity 1 2.38 Weight loss 1 2.38 Eating problems 1 2.38 Hair loss (temporary) 1 2.38 Neutropenia 1 2.38 Pain 1 2.38 Effectiveness Mean 3.62 Range 1 to 5

Lung Cancer 2018 Australian PEEK Study 141 Section 5 Clinical trial treatments and the average effectiveness rated as 4.37, in the effective range. The most commonly reported side Nineteen participants (23.75%) had taken part in effects were diarrhoea (N=6, 31.58%), nausea and clinical trials for lung cancer. The average quality of life vomiting (N=5, 26.32%), skin and nail changes (N=5, was reported as 4.42, in the “life was average” range, 26.32%) and blood chemistry changes (N=5, 26.32%).

Table 5.11: Clinical trial quality of life, side effects and effectiveness

Clinical trial N=19 QOL Mean 4.42 Range 1 to 7 Side effects Diarrhoea 6 (31.58%) Nausea and vomiting 5 (26.32%) Skin and nail changes 5 (26.32%) Blood chemistry changes 5 (26.32%) Fatigue 3 (15.79%) No side effects 3 (15.79%) Hair loss 2 (10.53%) Weight changes 2 (10.53%) eye problems 2 (10.53%) Appetite changes 1 (5.26%) Change in libido/sexual function 1 (5.26%) Chemo brain 1 (5.26%) Constipation 1 (5.26%) Easy bruising/bleeding 1 (5.26%) Infection 1 (5.26%) Anxiety 1 (5.26%) Reflux 1 (5.26%) Taste changes 1 (5.26%) Thyroid problems 1 (5.26%) Effectiveness Mean 4.37 Range 2 to 5

Lung Cancer 2018 Australian PEEK Study 142 Section 5 Experience with clinical trials confusing. I didn't know there were so many places I had to go for each visit. There are different forms for Yes, I did because it's a clinical trial, they tend to each place that you need to go to. You need hand in follow you very closely and see you very regularly and the right form to the right person at the right time. scan you very regularly. So, yes, it's been a comforting Just navigating a hospital sometimes can be very experience because of that frequent interaction. difficult. I think I remember going to the hospital in Participant 14 LOCATION/CITY A at that time was really confusing. If you want to go from level four to level three, you have Yes, fantastic actually. When my body developed to go from level four down to ground, to walk around resistance to the first line therapy, I was offered a the building to go then go back up to level three and drug or chemo or clinical trial. I chose the clinical trial things like that was very stressful when you're feeling and I was very well supported. I had a clinical trials really really vulnerable and you feel like your whole officer. I could call her any time. I was monitored very life depends on you getting to these places. I think the closely. and yes, really well supported and help of the clinical trial nurse was really good. If I was unfortunately, only lasted for maybe three months. I really lost then I can just call the clinical trial nurse and wasn’t stable. I had a very good experience of that the clinical trial nurse can make sure that I'm okay. actually. (was that the medication you just stopped) Sometimes it's really hard to always rely on them. You Yes, it is. Participant 40 feel like you need to do it all yourself. Does that answer the question? Participant 74 Yes. Interesting experiences. I've started the trial in LOCATION/CITY A. I'll tell you where I am now but I Well, lifesaving. I go to the LOCATION/CITY. I'm under started that trial just over three years ago. I had my NAME. He has a team down there and they look after scan results yesterday and everything is still stable lung cancer. He runs clinical trial. I couldn't speak and going really well. Side effects are very minimal. more highly of the support and care and the team, The experience that I've had was from they're great. Participant 72 LOCATION/CITY A. where I flew down every three weeks to participate in the trial. I had a brilliant team. Yes. I'm still on it. It's been the most wonderful The doctor there was fantastic. The clinical trial nurse experience. Everyone's been just amazing, supportive, was amazing. He guided me through the whole I feel like I'm getting just super care from everybody process and made sure that I got to the right place and there. I get checked every three weeks just to make everything was smooth. The care was definitely, from sure that I'm handling the side effects and everything my perspective- for example, if I have a scan and a properly. I get scans every three months. Participant blood test or three scans and blood tests on the same 75 morning, I just needed to have one jab in the arm and everything can be sorted out through that jab. When The trial then was for a new drug called Lorlatinib I was transferred from LOCATION/CITY. A to which is- it's a wonder drug really. I felt, in my LOCATION/CITY B site, staying on the same trial, that recollection, almost the day after I started taking it I experience was the opposite. I had a trial nurse that felt better. I guess the measurement, I've had scans didn't know what tests I needed to do, what every six weeks for the last two and a half years and appointments I needed to make. She kept making nothing's grown. Half of the tumours have shrunk. It's mistakes every time she made an appointment. I had been pretty effective from my point of view. to go in and call the different places and change my (experience, what interactions with people running appointments and make sure it fits properly. The the trial) NAME at the LOCATION/CITY, a fantastic hospital's system won't allow me to have one jab for guy. NAME, who's one of these research nurses there. everything. They said that for scientific reasons, they We've been in contact with him all the way through. can't but actually if they can in another hospital, I They have a nursing staff I know from being over don't understand why it's for scientific reasons. At one there, I've been there 30 times I think in the last two stage, I had to have three different cannulas. No, two and a half. We're really familiar with them. The other because two places allowed me to go to each other. doctors are very good. I've been to a couple of But a third place wouldn't It was just a blood test registrars in his time. They're really good. Participant separately as well. It was just frustrating because I 77 knew it could be much smoother and easier. I think psychologically going through a trial initially was very

Lung Cancer 2018 Australian PEEK Study 143 Section 5 Impact of lung cancer on quality of life degree (75.00%), and younger participants (56.82%)

Participants were asked (within the questionnaire), to described this more frequently. rate the impact of lung cancer on their quality of life on a scale of 1 to 7 (with 1 being ‘Life was very distressing Participant describes mild side effects as those that and 7 being ‘Life was great’). The average score was don't impact the ability to do everyday things/everyday living 2.68 in the life was a little distressing range. Probably something that doesn’t stop you from I Table 5.12: Impact of lung cancer on QOL guess going about your business. Participant 35 Impact of lung cancer on Mild side-effects would be not on a daily-basis, not N=80 Percent Quality of life debilitating to the point where you'd have to stop 1 Life is/was very distressing 18 22.50 what you were doing. Participant 38 2 Life is/was distressing 29 36.25 3 Life is/was a little Anything that can be managed on a day-to-day basis, distressing 14 17.50 but doesn't kind of really impact your function on a 4 Life is/was average 7 8.75 day-to-day basis. Participant 40 5 Life is/was good 5 6.25 6 Life is/was very good 6 7.50 Well, mild side effects, for myself, would be 7 Life is/was great 1 1.25 something that I can continue to live a normal life, Mean 2.68 that I'm not out of action really for my family, and just continuing on with what I would do previously.

40.00 Participant 44 35.00 You don't get any itchiness from it and it doesn't affect 30.00 your way of life whatsoever. Doesn't affect your 25.00 functioning and it doesn't bug you. You are not itchy 20.00

Percent and it doesn't cause any kind of pain. Well. Its not like 15.00 being annoying it's change but its not hurting me it's 10.00 just very mild, very mild. Participant 56 5.00 0.00 Mild would be your ability to cope with the side 1 Life 2 Life 3 Life 4 Life 5 Life 6 Life 7 Life is/was very is/was is/was a is/was is/was is/was very is/was effects, on a day-to-day basis, really well. They don't distressing distressing little average good good great impact your day, they are visible but not dominating distressing Figure 5.4: Impact of lung cancer on QOL your quality of life. Manageable. It's just something that you're going to have to live with for a period of Side effects of treatment time that is going to inconvenience you, I suppose that now I think of it. Participant 68 The most common description of mild side effects Nausea were those that do not greatly impact activities of daily living (n=39; 48.75%). This was the only major theme You might be a little bit nauseous, but you can take identified within this question. In relation to specific antiemetics and you'd be fine. Participant 19 side effects, not all participants described a single side effect that they considered to be mild, however, for With the Crizotinib, it was mild nausea and vomiting. those that did the most common was nausea (11.25%0, I called it mild because once you vomited it, you're fine followed by fatigue (10.00%), itches or rash 8.75%) and afterwards. It wasn't lasting like it was with diarrhea (6.25%). chemotherapy. Participant 31

In relation to sub-group variations, participants with a Probably mild nausea just feeling a little bit sick. trade or high school education (22.50%) and those with Participant 46 a mid to low SEIFA (33.33%) described mild side effects as those that don't impact the ability to do everyday Mild, I suppose, maybe to get headachey [sic] or just things/everyday living less frequently than the general a bit nauseous, but not too bad. You have just a little population (48.75%), while those with a university bit of, but not too bad. I suppose, for me, there have been the mild ones, I guess. Participant 58 Lung Cancer 2018 Australian PEEK Study 144 Section 5 Itchy skin or rash Fatigue I have had itchy skin that, but I feel I solved that better Mild would just be tiredness. Participant 1 than the doctor, the oncologist I see at LOCATION/HOSPITAL. I also have had rashes, a rash I wouldn't call the rashes mild because they were on my face. These are all sort of mild. I don't know of quite heavy for a while, maybe the lethargy was mild. any great, nothing has put me to bed in this trial. Participant 36 Participant 6

I think a little bit of tiredness would be mild. I'm well If I have rashes, then I can put moisturizer and things, aware of fatigue as they seem to prefer to talk about, and I'm fine. Participant 41 which because of these two that I was suffering, when I was unaware of what was causing it, for example, Irritants like a skin rash. It's not serious, it's not going my backyard didn't get planted in spring, I didn't have to do you any permanent damage, it's a irritant and the energy. That was a little bit more than mild, it was that's all. Participant 53 a bit debilitating, but it wasn't permanent. Participant 53 Would be rash that you can treat with ointments and creams or maybe a little bit of diarrhea every now and then. Participant 59

Table 5.13: Description of mild side effects Description of mild side effects All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes mild side effects as those that don't impact the ability to do everyday 39 48.75 7 41.18 9 52.94 23 50.00 16 47.06 things/everyday living Participant describes mild side effects as those 3 3.75 0 0.00 1 5.88 2 4.35 1 2.94 that do not last very long

Description of mild side effects All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes mild side effects as those that don't impact the ability to do 39 48.75 11 50.00 12 50.00 16 47.06 21 50.00 18 47.37 everyday things/everyday living Participant describes mild side effects as 3 3.75 0 0.00 2 8.33 1 2.94 1 2.38 2 5.26 those that do not last very long

Description of mild side effects All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes mild side effects as those that don't impact the ability to do everyday 39 48.75 24 50.00 15 46.88 14 38.89 25 56.82 things/everyday living Participant describes mild side effects as those 3 3.75 0 0.00 3 9.38 1 2.78 2 4.55 that do not last very long

Description of mild side effects All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes mild side effects as those that don't impact the ability to 39 48.75 32 49.23 7 46.67 9 22.50 30 75.00 29 58.00 10 33.33 do everyday things/everyday living Participant describes mild side effects 3 3.75 1 1.54 2 13.33 2 5.00 1 2.50 1 2.00 2 6.67 as those that do not last very long

Lung Cancer 2018 Australian PEEK Study 145 Section 5

60.00

50.00

40.00

30.00

20.00

10.00

0.00 Don't impact day-to-day life Do not last long

Figure 5.5: Description of mild side effects (percentage of all participants) 12

Rash Pain Nausea Tingli ng Vomitting Oedema Dizziness DiarrhoeaLoss of hair Unwellness HeadachesHot flushes NumbnessDry mouth Brittle nails Sore throat Manageable Constipation Stomach acheMuscle aches Change in taste Fatigue/tiredness Figure 5.6: Description of mild side effects (% of all participants)

Severe side effects In relation to sub-group variations, participants there were no participants with stage I or II lung cancer that The most common description of severe side effects reported fatigue/exhaustion as a severe side effect. were those that impact the ability to do everyday Those that were older (25.00%) and those that had a things/everyday living (n=29, 36.25%). There were 11 high school or trade education (25.00%) reported this participants (13.75%) described fatigue/exhaustion as less frequently than the general population (36.25%), a severe side effect and 11 participants (13.75%) that while those with a university degree (47.50%) described pain as a severe side effect. There were 13 described this more frequently. Participants with stage participants (16.25%) that described either nausea I and II lung cancer or other metastases (29.41%) n=8; 10.00%) or vomiting )n=5; 6.25%) as a severe side reported pain as a severe side effect more frequently effect. than the general population (13.75%)

146 Lung Cancer 2018 Australian PEEK Study Section 5 Participant describes severe side effects as those that Let's say, it's getting to the point which I was really impact the ability to do everyday things/everyday tired. You felt you were dragging a big great big rock living or something behind you to even do anything. I think that was the thing of being pushed into menopause I would describe a severe side effect by something too. They said it's a lot worse because I was normal that does impede you, that restricts your lifestyle or before and ended being pushed into it. Participant 26 your quality of life to the point where it becomes a focus of your life rather than just something that's That was the fatigue, I think it was just being tired. happening on the side, something that pre-occupies a That was with the chemo, I only had one cycle and I lot of your time or a lot of your mind because it's was just totally worn out. Participant 41 affecting your quality of life. Participant 2 I've had had fatigue that's another one but I haven't I think if you're not able to participate in your normal really got it at the moment. You do get fatigue with life, or if you're not able to feel any, I don't know if you this but severe that you were immobile. That you had can't feel any joy because you're completely to lie on the couch or in bed. That you lack strength, dehydrated and vomiting or itchy, or if it's the main you wouldn't want to wake much. Participant 56 focus, you can't think of anything else but the side effects and if you can't function because of these. The worst I’ve been through was when I just couldn’t Participant 4 stay awake. I was just so fatigued; I slept a lot. Participant 58 I can describe that as when you can't do what you want to do, you can't continue to do what you would Participant describes pain as a severe side effect normally do on your day-to-day life. That you have no- - too unwell to get up for, you are debilitated beyond You know you're scared if someone touch. This is what would allow you to carry on with what you'd like completely different. But you know I'm always to do even at a reduced amount. Participant 19 constantly conscious. Part of my surroundings and being in a crowd or just I'm just talking about the pain Severe, for me, would be something that meant that I that I hear every day every single day I think about was bedridden, severe vomiting, loss of appetite, you know people hugging me even it's just or people unable to sleep. Those things, for me, I would consider running up to me because they're excited to see me severe symptoms and it would mean that I just and then going for a hug I sort of sit back and think oh couldn't continue with my normal activities. That's no you know they're going to hurt me you know. what so important for me is just to continue on as a Yeah. A huge impact I think. Yes severe definitely. Um normal man and woman, continuing on, not allowing so we try new medication or treatment for lung this to dictate my life. Participant 44 cancer. Participant 3

Debilitating, and severely impacting quality of life. I'd There was nothing severe except for pain from the say that pretty much sums it up. Participant 67 portacath. This nerve pain was quite severe at first, and the mental health was probably the worst. The I would say they do stop you from being able to do the chemo, it was horrible, but it was bearable. What else normal things in your life. I would say they're more can you do? Participant 11 debilitating, more maybe long-term or chronic, and maybe they, I don't know whether ... maybe they Whereas, the pain in my oesophagus was severe would carry on after the treatment was finished. because I couldn’t…Well at one stage, I could hardly Participant 78 move let alone eat anything. Getting water down. When you can't swallow water because it's too Participant describes fatigue/exhaustion as a severe painful, it's alarming. I was concerned for my…I didn't side effect feel like I could look after myself properly because I knew I needed to stay hydrated, and my partner as Yes probably fatigue becomes severe in a different well…I would say that was really severe. It was very way. It's not distressing, but you just have to sleep all severe. Participant 22 the time…Participant 22

Lung Cancer 2018 Australian PEEK Study 147 Section 5 It's more severe when you get the sharp pain…I can If I had have taken a foot off I would've said that was get a sharp pain in my right shoulder or something like pretty severe. Participant 23 that just out of the blue. Just get a sharp pain and stuff like that. I get a tightening around my chest Severe side effects, I'd describe as…Well, it'd be sometimes. I feels like I've got some shapewear on extreme in things that were dangerous, that were pulling you in, that sort of feeling. Participant 80 actually threatening life, threatening organs. I'd also describe permanent side effects as serious and Participant describes nausea and/or vomiting as a debilitating side effects that meant that I was unable severe side effect to pursue normal activities. I think I've experienced all of that. Participant 39 The initial chemo when I was put into hospital because of the nausea and the vomiting, that was just To me, severe side effect is a bit like cholesterol levels constant. You'd just be constantly dry retching. increasing whereby it can actually damage part of Feeling nauseous that was awful and the your body, leading to maybe heart failure or radiotherapy, the swallowing. Participant 31 whatever, so a severe side effect to me is something that threatens your organs or your well being. The severe side effects that I couldn't cope with I guess Participant 68 was the vomiting and nausea. I think those were the worst for me. Participant 36 Participant describes loss of lung function/difficulties breathing as a severe side effect I couldn’t eat without vomiting, and this really severe nausea, and this really head-achey. Participant 58 Look, I may have lost a little bit of small lung function. I probably have but not a great deal what I already. Participant describes severe side effects as those that Participant 1 required hospitalisation The breathing because it scares you because if you Well, I'd say severe would be something maybe that can't get you breath, if you can't breathe you die and you might have to seek medical attention for, maybe at times it was like that. I couldn't get my breath. Yes. need a hospital admission for. Participant 20 That probably was the main one. Yes. I don't really think if I had a lot of side effects if you know what I Then obviously, when my blood count got low, that mean. Apart from say the breathing and the put me in a dangerous situation and I needed the emotional side effects were bad. They were bad. You blood transfusion…I got hospitalized with pneumonia, think too much and you overthink and that sort of so obviously, that was a severe…I spent four days in thing will get yourself into a panic. I hope I'm making hospital with that. Participant 45 sense. Participant 8

The things that actually made me pretty sick, either to Not being able to breathe was one of them. I just get back into the hospital. Participant 52 couldn't breathe properly at all. They put me on oxygen and then I couldn't reach the toilet without Participant describes severe side effects as those that having an extension reach. I ran into the toilet, by the can cause permanent damage, life threatening or time I got into the toilet, I had to crawl back because organ damage I couldn't breathe. Participant 25

A severe side effect would be the loss of a function or A severe side effect would be not being able to a requirement for surgical or serious medical breathe properly, yes. I'm short of breath all the time. intervention like a pulmonary embolism or having to Participant 76 have your foot removed…Yes, permanent. I would say severe is more…Although my fingertips are probably going to be permanent, but I just consider that mild.

Lung Cancer 2018 Australian PEEK Study 148 Section 5 Table 5.14: Description of severe side effects All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes severe side effects as those that impact the ability to do everyday 29 36.25 5 29.41 5 29.41 19 41.30 10 29.41 things/everyday living Participant describes fatigue/exhaustion as a 11 13.75 0 0.00 3 17.65 8 17.39 3 8.82 severe side effect Participant describes pain as a severe side effect 11 13.75 5 29.41 2 11.76 4 8.70 7 20.59 Participant describes nausea as a severe side effect 8 10.00 0 0.00 2 11.76 6 13.04 2 5.88 Participant describes vomiting as a severe side effect 5 6.25 1 5.88 1 5.88 3 6.52 2 5.88 Participant describes severe side effects as those that required hospitalisation 6 7.50 0 0.00 2 11.76 4 8.70 2 5.88 Participant describes severe side effects as those that can cause permanent damage, life 6 7.50 0 0.00 1 5.88 5 10.87 1 2.94 threatening or organ damage Participant describes loss of lung function/difficulties breathing as a severe side 6 7.50 3 17.65 2 11.76 1 2.17 5 14.71 effect

All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes severe side effects as those that impact the ability to do everyday 29 36.25 9 40.91 10 41.67 10 29.41 15 35.71 14 36.84 things/everyday living Participant describes fatigue/exhaustion as 11 13.75 1 4.55 7 29.17 3 8.82 5 11.90 6 15.79 a severe side effect Participant describes pain as a severe side effect 11 13.75 2 9.09 2 8.33 7 20.59 4 9.52 7 18.42 Participant describes nausea as a severe side effect 8 10.00 1 4.55 5 20.83 2 5.88 4 9.52 4 10.53 Participant describes vomiting as a severe side effect 5 6.25 2 9.09 1 4.17 2 5.88 4 9.52 1 2.63 Participant describes severe side effects as those that required hospitalisation 6 7.50 2 9.09 2 8.33 2 5.88 3 7.14 3 7.89 Participant describes severe side effects as those that can cause permanent damage, 6 7.50 3 13.64 2 8.33 1 2.94 5 11.90 1 2.63 life threatening or organ damage Participant describes loss of lung function/difficulties breathing as a severe 6 7.50 1 4.55 0 0.00 5 14.71 3 7.14 3 7.89 side effect

Lung Cancer 2018 Australian PEEK Study 149 Section 5 Table 5.14: Description of severe side effects (continued)

All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes severe side effects as those that impact the ability to do everyday 29 36.25 16 33.33 13 40.63 9 25.00 20 45.45 things/everyday living Participant describes fatigue/exhaustion as a 11 13.75 6 12.50 5 15.63 5 13.89 6 13.64 severe side effect Participant describes pain as a severe side effect 11 13.75 6 12.50 5 15.63 6 16.67 5 11.36 Participant describes nausea as a severe side effect 8 10.00 4 8.33 4 12.50 4 11.11 4 9.09 Participant describes vomiting as a severe side effect 5 6.25 4 8.33 1 3.13 3 8.33 2 4.55 Participant describes severe side effects as those that required hospitalisation 6 7.50 5 10.42 1 3.13 2 5.56 4 9.09 Participant describes severe side effects as those that can cause permanent damage, life 6 7.50 5 10.42 1 3.13 3 8.33 3 6.82 threatening or organ damage Participant describes loss of lung function/difficulties breathing as a severe side 6 7.50 3 6.25 3 9.38 5 13.89 1 2.27 effect

All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes severe side effects as those that impact the ability 29 36.25 23 35.38 6 40.00 10 25.00 19 47.50 20 40.00 9 30.00 to do everyday things/everyday living Participant describes fatigue/exhaustion as a severe side 11 13.75 10 15.38 1 6.67 6 15.00 5 12.50 7 14.00 4 13.33 effect Participant describes pain as a severe side effect 11 13.75 9 13.85 2 13.33 9 22.50 2 5.00 7 14.00 4 13.33 Participant describes nausea as a severe side effect 8 10.00 8 12.31 0 0.00 4 10.00 4 10.00 6 12.00 2 6.67 Participant describes vomiting as a severe side effect 5 6.25 5 7.69 0 0.00 4 10.00 1 2.50 4 8.00 1 3.33 Participant describes severe side effects as those that required 6 7.50 5 7.69 1 6.67 3 7.50 3 7.50 4 8.00 2 6.67 hospitalisation Participant describes severe side effects as those that can cause 6 7.50 4 6.15 2 13.33 1 2.50 5 12.50 4 8.00 2 6.67 permanent damage, life threatening or organ damage Participant describes loss of lung function/difficulties breathing as a 6 7.50 3 4.62 3 20.00 5 12.50 1 2.50 1 2.00 5 16.67 severe side effect

Lung Cancer 2018 Australian PEEK Study 150 Section 5

40.00 35.00 30.00 25.00 20.00 15.00 10.00 5.00 0.00

Pain Nausea Vomitting

Hospitalisation Fatigue/exhaustion Permanent damage Impact everyday living

Loss of lung function/difficulties breathing

Figure 5.7: Description of severe side effects (% of all participants)

Adherence to medications 80 70 Participants were asked in the online questionnaire, if 60 in general, if they were good at taking medicine and 50 sticking to it. The majority of participants were good at 40

sticking to treatments all of the time (N=55, 68.75%) Percent and the remaining were good at sticking to treatments 30 most of the time (N=22, 27.50%), or some of the time 20 (N=3, 3.75%). No participants felt they were never, 10 rarely or never good at sticking to treatments. 0 All of the time Most of the Sometimes Rarely Never time Table 5.15: Participants ability to stick with treatments Figure 5.8: Participants ability to stick with treatments Participant very good at sticking to treatments N=80 % The most common theme described was continuing on All of the time treatment as long as it is effective/evidence that it is 55 68.75 not working (n=27; 33.75%), and this was followed by Most of the time 22 27.5 taking the advice of their clinician (n=24; 30.00%). Sometimes 3 3.75 There were 20 participants (25.00%) that described Rarely 0 needing to see a test or scan results and eight (10.00%) Never 0 that described continuing on treatment as long as side effects are tolerable.

In relation to sub-group variations, participants with brain metastases (18.18%) reported continuing on treatment as long as it is effective/evidence less frequently than the general population (33.75%), while those from a low to mid SEIFA reported this more frequently (50.00%). Participants with other

Lung Cancer 2018 Australian PEEK Study 151 Section 5 metastases (41.67%) reported taking the advice of However I would stick with any medication until the clinicians more frequently than the general population doctors would tell me it's not working. Participant 61 (30.00%). Participants with brain metastases (36.36%), those with a university degree (37.50%) and those from Participant describes needing to see test or scan a high SEIFA (32.00%) reported needing to see a scan results or test result more frequently than the general population (25.00%), while those with stage I to II lung Yes. I wouldn't change anything until it's proven not cancer or no distant metastases (14.71%), those with a to work medically. Until actually I had scan results, I trade or high school education (12.50%) and those wouldn't give up on it. Participant 18 from a low to mid SEIFA (13.33%) described this less frequently. For me, I go with what the results are with a CT scan because every three months I'd go for a CT scan to Participant describes continuing on treatment as long check on the progress. If everything is stable then I as it is effective/evidence that it is not working. stay on that medication because the way this medication works is that the cancer does develop I guess it would depend on what the research said a…How do you phrase it? It develops resistance yes how long it takes to be effective or what the benefit that's the word to the medication which is what is. Participant 4 happened with crizotinib....For me, as long as the medication is working, I would stay on it depending Yes. I wouldn't change anything until it's proven not on the results from the CT scan, whether the cancer is to work medically. Until actually I had scan results, I either stable or it's reducing in size or it's disappeared wouldn't give up on it. Participant 18 completely. Some people are on evidence of disease, which really for me, that would be my dream if I can I'm very compliant with my treatments and I haven't get no evidence of disease. Participant 36 really given up on any of them. I will just tag along until they're not working. Participant 47 I don't give it up until it stops working, because I have six scans every eight weeks and it tells me if it's not Participant describes taking the advice of their working or not. Plus I'll probably feel sick, that's what specialist happened, I was on the first one I wouldn't have known unless it jumped to my brain. Participant 76 I, let's see, I'd probably go and talk to my GP about it, or the specialist that said, "Yes, take this." Clearly Participant describes continuing on treatment as long because, the only way they're going to know how you as side effects are tolerable react to a particular drug is if you tell them. I wouldn't just stop taking something. I would talk to my GP or Well I can't say I've given up yet, but if it got to the specialist about it before stopping it. Participant 12 point where I felt that it wasn't working and the side effects were so horrendous, I'd just say that's enough, Yes, so I was just given no other option really. I just but I haven't experienced that yet. Participant 22 followed the doctor's advice and yes, I don't know if I had the choice what I would do. I don't think I would No. I'll stick to it constantly until I've actually have side just drop it, I would look for something new. effects on it. I'll stick to everything until I actually got Participant 16 side effects and they couldn't give it to me anymore because obviously, then it'd be too dangerous. I'll go right through until the doctor tells me it's not Participant 52 working. I haven't stopped anything halfway through. Just this last one the Crizotinib that I've been on is the I think I'd stick with it as much as I could. It would have one that we've stopped and started a bit because of to be pretty severe, and have to be feeling pretty how I've been feeling, but all the others, I didn't have unhappy to discontinue it. Participant 62 a break off them. I did the full dose. Participant 31

Lung Cancer 2018 Australian PEEK Study 152 Section 5 Table 5.16: Adherence to treatment Adherence to treatment All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes continuing on treatment as long as it is effective/evidence that it is not 27 33.75 7 41.18 7 41.18 13 28.26 14 41.18 working Participant describes taking the advice of their 24 30.00 5 29.41 4 23.53 15 32.61 9 26.47 specialist Participant describes needing to see test or scan results 20 25.00 1 5.88 4 23.53 15 32.61 5 14.71 Participant describes continuing on treatment as 8 10.00 0 0.00 2 11.76 6 13.04 2 5.88 long as side effects are tolerable Adherence to treatment All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes continuing on treatment as long as it is effective/evidence 27 33.75 4 18.18 9 37.50 14 41.18 11 26.19 16 42.11 that it is not working Participant describes taking the advice of 24 30.00 5 22.73 10 41.67 9 26.47 14 33.33 10 26.32 their specialist Participant describes needing to see test or scan results 20 25.00 8 36.36 7 29.17 5 14.71 12 28.57 8 21.05 Participant describes continuing on treatment as long as side effects are 8 10.00 3 13.64 3 12.50 2 5.88 3 7.14 5 13.16 tolerable

Adherence to treatment All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes continuing on treatment as long as it is effective/evidence that it is not 27 33.75 15 31.25 12 37.50 10 27.78 17 38.64 working Participant describes taking the advice of their 24 30.00 14 29.17 10 31.25 14 38.89 10 22.73 specialist Participant describes needing to see test or scan results 20 25.00 13 27.08 7 21.88 9 25.00 11 25.00 Participant describes continuing on treatment as 8 10.00 5 10.42 3 9.38 2 5.56 6 13.64 long as side effects are tolerable Table 5.16: Adherence to treatment (continued) Adherence to treatment All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes continuing on treatment as long as it is effective/evidence that it is not 27 33.75 22 33.85 5 33.33 16 40.00 11 27.50 12 24.00 15 50.00 working Participant describes taking the advice of their specialist 24 30.00 20 30.77 4 26.67 10 25.00 14 35.00 16 32.00 8 26.67 Participant describes needing to see test or scan results 20 25.00 15 23.08 5 33.33 5 12.50 15 37.50 16 32.00 4 13.33 Participant describes continuing on treatment as long as side effects are 8 10.00 7 10.77 1 6.67 3 7.50 5 12.50 7 14.00 1 3.33 tolerable

Lung Cancer 2018 Australian PEEK Study 153 Section 5

40.00

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00 As long as it is effective Specalist advice Test or scan results Side effects tolerable

Figure 5.9: How long patients stick to a therapy (% of all participants)

Impact of treatment shrinking, it's doing this. That was the only way that I had any idea that it was working. Participant 2 The most common description was needing to needing to see test or scan results (including reduction in You could only go by the scans. We have these scans tumour size) (n=34; 42.50%) and this was followed by every three months. To have it any more than that needing to see a decrease in side effects of treatment would probably be a bit excessive, I would say. It's (n=23; 28.75%). There were 12 participants (15.00%) only really scans that you can go by. Some cancers, that described needing evidence of stable disease and obviously, they get blood tests that will give them the seven participants (8.75%) that described trusting their cancer markers. It's only really your scans that you can clinician. tell. Look, I wouldn't want mine every month. Every three months would be would be enough. Participant In relation to sub-group variations, participants with 20 stage I or II lung cancer (23.53%), those with a trade or high school education (27.50%) and those from a low I guess the thing is that you know if a treatment's to mid SEIFA (30.00%) described needing to see test or worked based on the scans. They're black and white. scan results less frequently than the general You know where you're at. If it's not working, it'd be population (42.50%), while those from remote or different if you're asking, perhaps, how long would regional areas (53.33) described this more frequently. you stick with a treatment if the side effects Participants with stage III lung cancer (17.65%) were…how long would you deal with the side effects described needing to see a decrease in side effects of of that treatment….Yes, and the things is that, if it's treatment, less frequently than the general population not working, why would you stay on it? As soon as you (28.75%), while those with brain metastases (45.45%) know that the treatment's ineffective, why would you reported this more frequently. put yourself through the toxicity and side effects of a drug that's not actually doing what it's meant to? Participant describes needing to see test or scan You'd be better off having no treatment, than a results (including reduction in tumour size) treatment that is only going to reduce your quality of life. Participant 67 The only way I had any idea of it working was the feedback I was getting from the specialist because every time I would have a CT scan or a PET scan and the results were coming back positive that it's

Lung Cancer 2018 Australian PEEK Study 154 Section 5 Participant describes needing to see a decrease in side long as it's stable, I'm so happy. I wouldn't move to effects of treatment (more manageable) another treatment until after that stops working. Participant 36 Probably a reduction in the side effects, obviously. If I could have had a treatment that didn't make me…the Yes. I feel like as a person, I'd like to hear something chemo itself about like it was killing me. I felt like I is reduced, the tumor has gotten smaller. Every time I was dying from the chemo rather than the cancer. go to the doctor, that's what I'm asking. Has it gotten Participant 46 smaller or has it reduced? To them, I shouldn't be asking that question because some of them explained I’d also want the side effects to be manageable. If it to me saying that just because it's reduced, doesn't they were too much, I’d just-- If they really affected mean it's not going to grow back. All they are looking my quality of life, I wouldn’t want to keep going. for is so that it's stable. Does that make sense? Participant 58 Participant 48

What needs to improve? Well, controlling of the side Participant describes trusting their doctors effects would be good, but I understand that how the drug works, it affects all of you. Epidermal function, Maybe communication with the specialised in him like so there's not really much that they can do about it. I it being having someone to ask questions. If you're think that some assistance as far as managing the unsure you know maybe someone where you can go side effects would be of benefit. Participant 60 to and say ‘NAME, is treatment supposed to be working within a day is it?’ Suppose we were going For me, it was my breathing improved, so when I was with a way or you know how long will it take to start in the hospital, I didn't need the oxygen supplement taking an effect. Yeah. So maybe yeah just someone anymore, and my back pain has gone heaps down. to talk to probably just ask questions you know I've They're the two things… yeah, that I keep thinking if got a hypothetical question for you now. Participant that's still happening, then Tarceva's still working, 2 until we roll around to the next scan and we can have it confirmed. Participant 78 Well this is the problem because you have no idea whether the treatment's working. You have to give it Participant describes needing evidence of stable time. For the chemo and the radiotherapy I just had to disease or no disease progression have faith. Have faith in the doctors that it would work. I told myself that the worse I was feeling, Scan results, so either stable or improved scan results. hopefully that was just, if I felt that bad then the Participant 18 cancer cells must be getting that much of a kicking. Participant 32 What needs to improve is for the cancer to have reduced in size in some sort or to disappear really. As

Table 5.17: What needs to change to feel like a treatment is working What needs to change to feel like treatment is All participants Stage I and II Stage III Stage IV Stage I to III effective n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes needing to see test or scan results (including reduction in tumour size) 34 42.50 4 23.53 8 47.06 22 47.83 12 35.29 Participant describes needing to see a decrease in side effects of treatment 23 28.75 5 29.41 3 17.65 15 32.61 8 23.53 Participant describes needing evidence of stable 12 15.00 2 11.76 3 17.65 7 15.22 5 14.71 disease or no disease progression Participant describes trusting their doctors 7 8.75 2 11.76 3 17.65 2 4.35 5 14.71

Lung Cancer 2018 Australian PEEK Study 155 Section 5 Table 5.17: What needs to change to feel like a treatment is working (continued) What needs to change to feel like All participants Brain metastases Other metastases No distant Better Worse treatment is effective metastases energy/fatigue energy/fatigue n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes needing to see test or scan results (including reduction in tumour 34 42.50 11 50.00 11 45.83 12 35.29 20 47.62 14 36.84 size) Participant describes needing to see a 23 28.75 10 45.45 5 20.83 8 23.53 12 28.57 11 28.95 decrease in side effects of treatment Participant describes needing evidence of stable disease or no disease progression 12 15.00 2 9.09 5 20.83 5 14.71 9 21.43 3 7.89 Participant describes trusting their doctors 7 8.75 1 4.55 1 4.17 5 14.71 2 4.76 5 13.16

What needs to change to feel like treatment is All participants Less pain More pain Older (55 and older) Younger (18 to 54) effective n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes needing to see test or scan results (including reduction in tumour size) 34 42.50 20 41.67 14 43.75 13 36.11 21 47.73 Participant describes needing to see a decrease in side effects of treatment 23 28.75 12 25.00 11 34.38 10 27.78 13 29.55 Participant describes needing evidence of stable 12 15.00 10 20.83 2 6.25 3 8.33 9 20.45 disease or no disease progression Participant describes trusting their doctors 7 8.75 4 8.33 3 9.38 2 5.56 5 11.36

45.00

40.00

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00 Test or scan results Decrease in side effects Stable disease/no progression Tr usting doctor

Figure 5.10: What needs to change to feel like treatment is effective (Percentage of all participants)

Lung Cancer 2018 Australian PEEK Study 156 Section 5

Use of complementary therapies Alternative therapies, I would not use unless I'd really talked it through with the oncologist. I don't have The most common theme was that the participant anything against alternative therapies, but I think described not using complementary therapies (n=20; that things can interfere with other treatment 25.00%). The most common therapies that were regimens that you're on. If I got to the point where considered complementary and described by there was no hope for me and alternative therapies participants were vitamins and supplements (n=19; could make me more comfortable, I'd use them. But I 23.75%). There were nine participants (11.25%) that guess, in my heart, I don't believe they're going to described having a specific diet, and eight (10.00%) cure me. Participant 32 that described seeing a naturopath. Participant describes taking vitamins and In relation to sub-group variations, participants with supplements stage II lung cancer (11.76%) described not trying any complementary therapies, less frequently than the They've allowed me to take a Vitamin B tablet which general population (25.00%), while those with other I asked if I could. Last week, I asked him if I could take- metastases 41.67%) described this more frequently. - because I had this terrible cold that hung around for Participants with a trade or high school education a full week or something. I asked him if I could take a (12.50%) reported taking vitamins and supplements multi-vitamin, and I can. Participant 6 less frequently than the general population (23.75%), while those with a university degree reported this Various vitamins and stuff. You've got to be a bit more frequently (35.00%). Participants with brain cautious, do check with what you're taking when metastases described seeing a naturopath (22.73%) you're having chemo and stuff. Participant 14 described seeing a naturopath more frequently than the general population (10.00%). There were no No. [chuckles] With my first round of chemo, I did do participants with stage I or II lung and no participants a multivitamins regime and I made dietary changes, from rural or regional areas that described having a but other than that, I haven't gone down the specific diet. alternative route. Participant 45

Participant describes not trying any complementary No. I'm just taking normal things like vitamin C and medicines horseradish and garlic and vitamin B and magnesium, but they're all ones that I was taking before anyway I'm very careful with, especially with Alectinib, just for better health. Especially vitamin C, because there are so many drug interactions. I don't horseradish and garlic, I thought was a double back take vitamins, I don't take minerals and I don't take so that I wouldn't get any colds or anything because anything. A lot of people have tried to help me. A lot I'd have the horrors if I got cold or a flu. Participant 65 of friends have been kind. Someone gave me some tea from a Chinese herbalist, but because there are no Participant describes having a specific diet ingredients listed I haven't taken that. I try to just stick to the very simple chamomile tea, things that I do at Also, I've changed my diet completely for nutrition. I home, I might pick something from the garden and did see a dietitian, but I've basically done it myself. make some tea from that. I don't really try much else. Complete change of diet and also alkaline water, that No, I just stick to honey. Things that I know are safe, kind of thing. Detox for health, I guess, but other yes. Participant 13 therapies, I haven't really done anything else. Participant 40 I haven't really gone down that path. I've had several people try and ask me to do the natural therapies and No, I don't know. If you eat real healthy food, vegan diet and all of that stuff. I've just decided that vegetables, fruits, grains, meat, fish, eggs, berry, you it's not worth changing my diet now, it's not going to don't need supplements. If you have a very good diet. help, so then I'm just living as I lived. I don't eat really That's me because I believe so. Participant 56 unhealthy anyway. To be honest with you, going out and buying all that stuff, I just think it's a big waste of money. Participant 24

Lung Cancer 2018 Australian PEEK Study 157 Section 5 I do a lot of things differently, it's not necessarily therapy like I eat differently but I haven't seen a Since I finished treatment, I have been on daily nutritionist. Does that count? Participant 74 complementary therapies. He's a naturopath in LOCATION, and he's a Chinese herbalist. I've been Participant describes seeing a naturopath taking Chinese herbs every day. Participant 55

I've consulted many naturopaths and even talked to I’ve had naturopathy which I find really helps with the them about the supplements that I felt would be side effects and things, also have acupuncture. useful and the supplements they thought would be Participant 58 useful. Participant 19

Table 5.18: Use of complementary therapies Use of complementary therapies All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes not trying any complementary medicines 20 25.00 4 23.53 2 11.76 14 30.43 6 17.65 Participant describes taking vitamins and supplements 19 23.75 5 29.41 4 23.53 10 21.74 9 26.47 Participant describes having a specific diet 9 11.25 0 0.00 1 5.88 8 17.39 1 2.94 Participant describes seeing a naturopath 8 10.00 0 0.00 1 5.88 7 15.22 1 2.94 Participant describes taking natural home remedies, Manukau honey, Camomile, Alkaline 6 7.50 2 11.76 0 0.00 4 8.70 2 5.88 drinks Participant describes trying to eat healthy and remain active 6 7.50 1 5.88 1 5.88 4 8.70 2 5.88 Participant describes seeing a physiotherapist 5 6.25 1 5.88 2 11.76 2 4.35 3 8.82 Participant describes seeing a Chinese herbalist 5 6.25 0 0.00 1 5.88 4 8.70 1 2.94 Participant describes doing mindfulness meditation 5 6.25 0 0.00 2 11.76 3 6.52 2 5.88 Participant describes doing yoga 5 6.25 0 0.00 2 11.76 3 6.52 2 5.88

Use of complementary therapies All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes not trying any complementary medicines 20 25.00 4 18.18 10 41.67 6 17.65 10 23.81 10 26.32 Participant describes taking vitamins and supplements 19 23.75 5 22.73 5 20.83 9 26.47 11 26.19 8 21.05 Participant describes having a specific diet 9 11.25 3 13.64 5 20.83 1 2.94 7 16.67 2 5.26 Participant describes seeing a naturopath 8 10.00 5 22.73 2 8.33 1 2.94 5 11.90 3 7.89 Participant describes taking natural home remedies, Manukau honey, Camomile, 6 7.50 3 13.64 1 4.17 2 5.88 2 4.76 4 10.53 Alkaline drinks Participant describes trying to eat healthy and remain active 6 7.50 3 13.64 1 4.17 2 5.88 4 9.52 2 5.26 Participant describes seeing a physiotherapist 5 6.25 0 0.00 2 8.33 3 8.82 3 7.14 2 5.26 Participant describes seeing a Chinese herbalist 5 6.25 2 9.09 2 8.33 1 2.94 3 7.14 2 5.26 Participant describes doing mindfulness meditation 5 6.25 3 13.64 0 0.00 2 5.88 5 11.90 0 0.00 Participant describes doing yoga 5 6.25 2 9.09 1 4.17 2 5.88 4 9.52 1 2.63

Lung Cancer 2018 Australian PEEK Study 158 Section 5 Table 5.18: Use of complementary therapies (continued)

Use of complementary therapies All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes not trying any complementary medicines 20 25.00 14 29.17 6 18.75 9 25.00 11 25.00 Participant describes taking vitamins and supplements 19 23.75 12 25.00 7 21.88 8 22.22 11 25.00 Participant describes having a specific diet 9 11.25 8 16.67 1 3.13 4 11.11 5 11.36 Participant describes seeing a naturopath 8 10.00 6 12.50 2 6.25 2 5.56 6 13.64 Participant describes taking natural home remedies, Manukau honey, Camomile, Alkaline 6 7.50 6 12.50 0 0.00 2 5.56 4 9.09 drinks Participant describes trying to eat healthy and remain active 6 7.50 3 6.25 3 9.38 3 8.33 3 6.82 Participant describes seeing a physiotherapist 5 6.25 3 6.25 2 6.25 3 8.33 2 4.55 Participant describes seeing a Chinese herbalist 5 6.25 4 8.33 1 3.13 0 0.00 5 11.36 Participant describes doing mindfulness meditation 5 6.25 5 10.42 0 0.00 0 0.00 5 11.36 Participant describes doing yoga 5 6.25 5 10.42 0 0.00 1 2.78 4 9.09

Use of complementary therapies All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes not trying any complementary medicines 20 25.00 18 27.69 2 13.33 8 20.00 12 30.00 14 28.00 6 20.00 Participant describes taking vitamins and supplements 19 23.75 15 23.08 4 26.67 5 12.50 14 35.00 13 26.00 6 20.00 Participant describes having a specific 9 11.25 9 13.85 0 0.00 6 15.00 3 7.50 8 16.00 1 3.33 diet Participant describes seeing a 8 10.00 6 9.23 2 13.33 3 7.50 5 12.50 7 14.00 1 3.33 naturopath Participant describes taking natural home remedies, Manukau honey, 6 7.50 5 7.69 1 6.67 3 7.50 3 7.50 4 8.00 2 6.67 Camomile, Alkaline drinks Participant describes trying to eat healthy and remain active 6 7.50 5 7.69 1 6.67 0 0.00 6 15.00 5 10.00 1 3.33 Participant describes seeing a physiotherapist 5 6.25 4 6.15 1 6.67 3 7.50 2 5.00 3 6.00 2 6.67 Participant describes seeing a Chinese herbalist 5 6.25 4 6.15 1 6.67 1 2.50 4 10.00 4 8.00 1 3.33 Participant describes doing mindfulness meditation 5 6.25 5 7.69 0 0.00 2 5.00 3 7.50 5 10.00 0 0.00 Participant describes doing yoga 5 6.25 4 6.15 1 6.67 2 5.00 3 7.50 5 10.00 0 0.00

Lung Cancer 2018 Australian PEEK Study 159 Section 5

30.00

25.00

20.00

15.00

10.00

5.00

0.00

Yoga

Specific diet Naturopath Physiotherapist Home remedies Healthy lifestyle Chinese herbalist No complementary

Mindfullness meditation Vitamins and supplements Figure 5.11: Use of complementary therapies (percentage of all participants)

Preference for treatment metastases (31.82%) described this more frequently. Participants with stage III lung cancer (0.00%) The majority of participants (n=63; 78.75%) described described a preference for home treatment based on a preference for taking a pill at home and in contrast, causing less disruptions for the children, less frequently 13 participants (16.25%) described a preference for than the general population (11.25%). Participants chemotherapy in hospital. For those that described a with stage III cancer (29.41%) and those from low to preference for a pill at home, the main reasons were mid SEIFA (26.67%) described a preference for the reduced impact on everyday living (n=26; 32.50%), hospital, as they can be monitored and tested, more ease of administration (n=13; 16.25%) and because frequently than the general population (12.50%). hospitals tend to be depressing (n=13; 16.25%). For Participants with brain metastases (4.55%) described a those that described a preference for hospital, the preference for treatment at home based on ease of main reason was because they can be monitored and administration and less intrusive, less frequently than tested (n=10; 12.50%). the general population (16.25%). Participants that were younger (40.91%) described a preference for In relation to sub-group variations, participants from treatment at home based on reduced impact on regional or remote areas (66.67%) and those from mid everyday routine, more frequently than the general to low SEIFA (63.33%) described a preference for population (32.50%), while those with more pain treatment at home less frequently than the general (15.63), those from regional or remote areas (13.33%) population (78.75%). Participants with stage III lung and those from low to mid SEIFA (16.67%) described cancer (29.41%) described a preference for this less frequently. Participants from regional and chemotherapy in hospital more frequently than the remote areas (20.00%) described a preference for general population (16.25%), while those with stage IV treatment at home based on the support they have at lung cancer (10.87%) described this less frequently. home, more frequently than the general population Participants with stage I to III lung cancer (5.88%) (20.00%). described a preference for at home based treatment on the feeling that hospitals are depressing or not a good experience, less frequently than the general population (16.25%), while those with brain

Lung Cancer 2018 Australian PEEK Study 160 Section 5 Preference for at home (Pill form) is based on reduced Preference for at home (Pill form) is based on the impact on everyday routine feeling that hospitals are depressing or not a good experience At home as a normal medicine…Because that's what I'm currently on. It doesn't impact on your daily Going into the hospital to go and sit in what we used routines and your daily living life, so it's convenience to call the angry chair, you go and sit in the chair, you wise and timewise. Participant 18 get all sorts of toxic, nasty stuff put into your veins and you're surrounded by people with varying illness. At home in a tablet just because you feel like you don't Nobody wants to really talk to you. Participant 23 have a life. You can't plan on things because even now, interviews now. Have a look at how many times As soon as you go into hospital, even if you are well, that's been, with the other lady, it's being put off or you start feeling sick. It's just the environment. At something come up or something. If you had a tablet home, you've got all your comforts. You've got the at home, I can go anywhere with them. You got your food that you like to eat, in hospital, you've got life practically, you know what I mean, to some dreadful food that they bring you. The nurses are extent. Participant 26 fabulous, but there's nothing like being at home. Participant 31 Definitely at home. Normal medicine because it's so much more convenient. It just allows you to live much I'd rather have a tablet any day because going and more normally…Participant 40 sitting in the chemo wards and all the-- It's a horrible place. They make it as nice as they could, but God, it's At home, 100%. For me, as I said before, maintaining worst place on earth. What you're seeing there a normal life, is paramount to feeling well, and surrounded by other people with chemo its like participating in my life actively, is vital to my well- moving into a parallel universe and feeling completely being, which is vital to then me getting well. To be at cut off from the real world. If you could take it at home home and pop my pills it's a blessing for me. It's and have the same outcomes, why wouldn't you? fantastic. I would choose that every time. I would Participant 55 choose to go into a hospital and have it if I have to, because, like I said before, my biggest desire from all I live a pretty normal life but every two weeks I have of this was to stay alive. I would have done whatever to put a hold on that and go and see all my mates I had to do. Participant 44 down in the oncology at LOCATION who are all the lovely and I think they're all great, however I feel I would have it at home in pure form just to keep life different when I'm down there rather than having…I as normal as possible. I always try to avoid hospital become a patient. I become that sick person, I become where I can. But that's just me. I'm quite happy to try that person who's got terminal cancer who is needing and keep things as normal as possible. Participant 62 of all these extra support around them and needing to have all this treatment. I become that patient. That's Preference for at home (Pill form) is based on ease of where it's a state of mind. Like in a way you have to administration and less intrusive be strong enough to rise above that to not be dragged down by the system in a sense. Participant 72 A pill. A pill because as I said, I have trouble with my veins, and I hate drips. Things like that give me Preference is for hospital, as they can be monitored heebie-jeebies. I guess it's a lot more comfortable at and tested home. You don't have to make a special trip. It's just a convenience thing as well. Participant 11 Actually I would say hospital because the hospital that I was in the care was just amazing. So having them More obviously I prefer at home. Simply because it's around if something wasn't right you know they're more time effective, less intrusive. Assuming it just about the way. So yeah probably yeah I'd say depends on the side effects and things. Participant 57 hospital actually. Participant 2

If it was new, I'd probably want to be in a clinical environment just for the initial dose, just in case of side effects and I get a reaction to it. Participant 20

Lung Cancer 2018 Australian PEEK Study 161 Section 5 I'd probably prefer the going to the hospital because doctors or anything. I know it sounds a little bit crazy. then you've got the support of medical staff all along Participant 27 the way. If there's any problems that you're having, you've got someone to talk each week. I must say, I I would rather be in hospital where they can test me. know it sounds pretty stupid, but since I have finished If I was at home taking the medication and I got sick, my treatment, I've actually missed that. I went from I wouldn't know what to do. Some people like it at being at the hospital every single day to one of the home. I'd rather in a hospital where they can see days per week being a whole day, to absolutely where the doctors would be and they will know nothing and having no contact with any nurses or everything is okay. Participant 70

Table 5.19: Preference for treatment Preference for treatment: hospital All participants Stage I and II Stage III Stage IV Stage I to III (chemotherapy) or home (pill form) n=80 % n=17 % n=17 % n=46 % n=34 % Preference is for a pill at home 63 78.75 14 82.35 12 70.59 37 80.43 26 76.47

Preference is for chemotherapy at hospital 13 16.25 3 17.65 5 29.41 5 10.87 8 23.53

Other, depends on the severity of treatment or 4 5.00 0 0.00 0 0.00 4 8.70 0 0.00 doctor’s advice Preference for at home (Pill form) is based on reduced 26 32.50 4 23.53 5 29.41 17 36.96 9 26.47 impact on everyday routine Preference for at home (Pill form) is based on ease of administration and less intrusive 13 16.25 3 17.65 3 17.65 7 15.22 6 17.65 Preference for at home (Pill form) is based on the feeling that hospitals are depressing or not a good 13 16.25 0 0.00 2 11.76 11 23.91 2 5.88 experience Preference for at home (Pill form) is based on causing less disruptions for the children 9 11.25 3 17.65 0 0.00 6 13.04 3 8.82 Preference for at home (Pill form) is based on the support at home 6 7.50 1 5.88 2 11.76 3 6.52 3 8.82 Preference is for hospital, as they can be monitored and tested 10 12.50 2 11.76 5 29.41 3 6.52 7 20.59 Preference is for hospital, as there are others around for support 2 2.50 1 5.88 0 0.00 1 2.17 1 2.94 Preference is for hospital, as they do not like taking pills 2 2.50 0 0.00 0 0.00 2 4.35 0 0.00

Preference for treatment: hospital All participants Brain metastases Other metastases No distant Better Worse (chemotherapy) or home (pill form) metastases energy/fatigue energy/fatigue n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Preference is for a pill at home 63 78.75 19 86.36 18 75.00 26 76.47 35 83.33 28 73.68 Preference is for chemotherapy at hospital 13 16.25 2 9.09 3 12.50 8 23.53 5 11.90 8 21.05

Other, depends on the severity of treatment or doctor’s advice 4 5.00 1 4.55 3 12.50 0 0.00 2 4.76 2 5.26 Preference for at home (Pill form) is based on 26 32.50 9 40.91 8 33.33 9 26.47 17 40.48 9 23.68 reduced impact on everyday routine Preference for at home (Pill form) is based on ease of administration and less intrusive 13 16.25 1 4.55 6 25.00 6 17.65 6 14.29 7 18.42 Preference for at home (Pill form) is based on the feeling that hospitals are depressing or not a 13 16.25 7 31.82 4 16.67 2 5.88 9 21.43 4 10.53 good experience Preference for at home (Pill form) is based on causing less disruptions for the children 9 11.25 2 9.09 4 16.67 3 8.82 4 9.52 5 13.16 Preference for at home (Pill form) is based on the support at home 6 7.50 2 9.09 1 4.17 3 8.82 4 9.52 2 5.26 Preference is for hospital, as they can be monitored and tested 10 12.50 1 4.55 2 8.33 7 20.59 3 7.14 7 18.42 Preference is for hospital, as there are others around for support 2 2.50 0 0.00 1 4.17 1 2.94 1 2.38 1 2.63 Preference is for hospital, as they do not like taking pills 2 2.50 1 4.55 1 4.17 0 0.00 2 4.76 0 0.00

Lung Cancer 2018 Australian PEEK Study 162 Section 5 Table 5.19: Preference for treatment (continued)

Preference for treatment: hospital All participants Less pain More pain Older (55 and older) Younger (18 to 54) (chemotherapy) or home (pill form) n=80 % n=48 % n=32 % n=36 % n=44 % Preference is for a pill at home 63 78.75 41 85.42 22 68.75 29 80.56 34 77.27 Preference is for chemotherapy at hospital 13 16.25 5 10.42 8 25.00 5 13.89 8 18.18

Other, depends on the severity of treatment or doctor’s advice 4 5.00 2 4.17 2 6.25 2 5.56 2 4.55 Preference for at home (Pill form) is based on reduced 26 32.50 21 43.75 5 15.63 8 22.22 18 40.91 impact on everyday routine Preference for at home (Pill form) is based on ease of administration and less intrusive 13 16.25 10 20.83 3 9.38 6 16.67 7 15.91 Preference for at home (Pill form) is based on the feeling that hospitals are depressing or not a good 13 16.25 9 18.75 4 12.50 7 19.44 6 13.64 experience Preference for at home (Pill form) is based on causing less disruptions for the children 9 11.25 7 14.58 2 6.25 2 5.56 7 15.91 Preference for at home (Pill form) is based on the support at home 6 7.50 3 6.25 3 9.38 2 5.56 4 9.09 Preference is for hospital, as they can be monitored and tested 10 12.50 4 8.33 6 18.75 3 8.33 7 15.91 Preference is for hospital, as there are others around for support 2 2.50 1 2.08 1 3.13 1 2.78 1 2.27 Preference is for hospital, as they do not like taking pills 2 2.50 1 2.08 1 3.13 1 2.78 1 2.27

Preference for treatment: hospital All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low (chemotherapy) or home (pill form) remote school SEIFA n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Preference is for a pill at home 63 78.75 53 81.54 10 66.67 31 77.50 32 80.00 44 88.00 19 63.33 Preference is for chemotherapy at hospital 13 16.25 9 13.85 4 26.67 6 15.00 7 17.50 4 8.00 9 30.00

Other, depends on the severity of treatment or doctor’s advice 4 5.00 3 4.62 1 6.67 3 7.50 1 2.50 2 4.00 2 6.67 Preference for at home (Pill form) is based on reduced impact on everyday routine 26 32.50 24 36.92 2 13.33 12 30.00 14 35.00 21 42.00 5 16.67 Preference for at home (Pill form) is based on ease of administration and less intrusive 13 16.25 11 16.92 2 13.33 7 17.50 6 15.00 10 20.00 3 10.00 Preference for at home (Pill form) is based on the feeling that hospitals are depressing 13 16.25 10 15.38 3 20.00 5 12.50 8 20.00 11 22.00 2 6.67 or not a good experience Preference for at home (Pill form) is based on causing less disruptions for the children 9 11.25 7 10.77 2 13.33 4 10.00 5 12.50 5 10.00 4 13.33 Preference for at home (Pill form) is based on the support at home 6 7.50 3 4.62 3 20.00 4 10.00 2 5.00 2 4.00 4 13.33 Preference is for hospital, as they can be monitored and tested 10 12.50 7 10.77 3 20.00 4 10.00 6 15.00 2 4.00 8 26.67 Preference is for hospital, as there are others around for support 2 2.50 2 3.08 0 0.00 1 2.50 1 2.50 2 4.00 0 0.00 Preference is for hospital, as they do not like taking pills 2 2.50 1 1.54 1 6.67 1 2.50 1 2.50 1 2.00 1 3.33

Lung Cancer 2018 Australian PEEK Study 163 Section 5

90.00

80.00

70.00

60.00

50.00

40.00

30.00

20.00

10.00

0.00 Preference is forPreference is for Other, depends Preference for Preference for Preference for Preference for Preference for Preference is for Preference is forPreference is for a pill at home chemotherapy on the severity at home (Pill at home (Pill at home (Pill at home (Pill at home (Pill hospital, as they hospital, as hospital, as they at hospital of treatment or form) is based form) is based form) is based form) is based form) is based can be there are others do not like doctor’s advice on reduced on ease of on the feeling on causing less on the support monitored and around for taking pills impact on administration that hospitals disruptions for at home tested support ev eryday and less are depressing the children routine intrusive or not a good experience Figure 5.12: Preference for treatment: hospital (chemotherapy), or home (pill form) (percentage of all participants)

Support needed for treatment (pill form) at home Participant describes needing someone to call (telephone) who is available and responsive The most common supported described was needing someone to call on the telephone who is available and Probably somebody that I could have called on when responsive at all times (n=30; 37.50%) and 10 I wasn't sure about things, or is this right? Should I be participants (12.50%) that describes being well feeling this way, or is this going to pass, or is it informed and having their own support services, and something more serious? Is this a reaction or a side are confident to take medication at home. There were effect of this thing? That would be it like some sort of eight participants (10.00%) that described being hotline or someone to talk to when I have questions concerned about managing side effects, eight rather that having to go to the GP all the time. participants (10.00%) that described needing clear Participant 11 instructions and what to expect in relation to side effects, and eight participants (10.00%) that described Okay. Just to be able to have someone that I can ring needing to be able to access their oncologist. and say, Hey, this is happening to me, is this okay or can I do this or is there something else. At the very In relation to sub-group variations, participants with beginning of my diagnosis, I was given my nurse, the stage I and II lung cancer (0.00%) describes being well clinical nurse that I'm supposed to be able to get in informed and having their own support services, and touch with but 10 times out of 10, she's hard to reach. are confident to take medication at home, less I've left messages sometimes and she never calls back frequently than the general population (12.50%). and she's a lovely lady, I know it's probably because Participants with stage I and II lung cancer (29.41) of her workload, I don't know, I'm making excuses for described needing someone to be physically available her but it's really hard. At the beginning of my (immediately/quickly) if they needed help, more treatment, I was really depressed and it was times frequently than the general population (8.75%). that I really needed to speak to her and I just couldn't get a hold of her and it was just- I even sent her an email, I didn't get a response. Participant 36

Lung Cancer 2018 Australian PEEK Study 164 Section 5 From my experience, because I've only taken pills, Participant's main concern is in relation to managing what would be most helpful is a hotline where I can side effects easily just call and say, is this a side effect or is this important? Do I need to- almost like an information If I got really bad side effects, I'd want someone that hotline where I can just call and check on every little could help me like physically help me and mentally, I every- not little thing but when I'm concerned about guess yes. I think I'd just want to know there were something I can call and say, I've had diarrhea, I don't people I could call on if I got really ill from it. Do you think I've eaten anything funny, is this common with know what I mean? If I was vomiting non stop…I know this pill? Because I had that at the beginning and I what chemo can do to you, so I guess I'd need physical found that to be really useful. Participant 74 help. That kind of thing. I'd like to know that was available straightaway. Participant 1 Participant describes being well informed and having their own support services, confident to take You'd really want to know about the drug itself and medication at home any possible side effects. Participant 12

Like I said, I'm pretty well informed of it as far as the I guess just knowing when it is that you should go to background, so I have my own support services, if that hospital if you need to. The side effects, if they're mild makes sense. I can't I've ever really asked for you could sort of not worry about it. Just knowing at assistance in that respect because I generally know a what point should you start to go to hospital. lot about the treatment before I start, through my Participant 35 own research. Participant 19 First thing I'd like is some printed information to No. I've been very confident about doing that without explain the drug and what the common side-effects supervision. Sorry, I'm not going to be very helpful. I'm are. Participant 59 just really grateful to be able to do that, really grateful to have the tablets take at home and I have Participant describes needing clear instructions in no issues with remembering the tablets or taking it at relation to medication usage. the right time, or I was very diligent with that. There was nothing about taking the tablets per se that Reassurance from the oncologist as well as backup, caused me anxiety at all. Participant 40 what do you call it, document from the pharmaceutical to say the dos and don'ts with it Well, that is the type of medicine I'm taking and I would be a leaflet, product leaflet, I suppose. I think didn't need any support. We had an information there's a technical word for it but I can't remember session with the nursing manager before I moved on what it is. Participant 18 to the medication and that was enough for me to ask any questions. I always felt like I was able to contact All you'd need is the education on what to look out for them if I had any additional questions and we have like a sound something that's what you got to look out done that. That was enough support for me to do it for. Then in your own mind you know like, "This isn't from home. Participant 44 right." like…or something you know what I mean? Participant 26

Written and oral information about how that works, the side effects. What happens when you go wrong. For me instructions and a plan in place about again how that works and if it doesn't work, what does one do. Participant 61

Lung Cancer 2018 Australian PEEK Study 165 Section 5 Table 5.20: Support needed for treatment (pill form) at home Support needed for treatment (pill form) at All participants Stage I and II Stage III Stage IV Stage I to III home n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes needing someone to call (telephone) who is available 30 37.50 7 41.18 5 29.41 18 39.13 12 35.29 Participant describes being well informed and having their own support services, confident (or 10 12.50 0 0.00 2 11.76 8 17.39 2 5.88 are) to take medication at home Participant's main concern is in relation to managing side effects 8 10.00 3 17.65 0 0.00 5 10.87 3 8.82 Participant describes needing clear instructions in relation to medication usage and what to expect 8 10.00 2 11.76 2 11.76 5 10.87 4 11.76 in relation to potential adverse effects Participant describes needing someone to be physically available (immediately/quickly) if they 7 8.75 5 29.41 1 5.88 1 2.17 6 17.65 needed help

Support needed for treatment (pill All participants Brain metastases Other metastases No distant Better Worse form) at home metastases energy/fatigue energy/fatigue n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes needing someone to call (telephone) who is available 30 37.50 9 40.91 9 37.50 12 35.29 12 28.57 18 47.37 Participant describes being well informed and having their own support services, confident (or are) to take medication at 10 12.50 5 22.73 3 12.50 2 5.88 7 16.67 3 7.89 home Participant's main concern is in relation to managing side effects 8 10.00 2 9.09 3 12.50 3 8.82 1 2.38 7 18.42 Participant describes needing clear instructions in relation to medication usage and what to expect in relation to potential 8 10.00 0 0.00 5 20.83 4 11.76 4 9.52 5 13.16 adverse effects Participant describes needing someone to be physically available 7 8.75 1 4.55 0 0.00 6 17.65 4 9.52 3 7.89 (immediately/quickly) if they needed help

Support needed for treatment (pill form) at All participants Less pain More pain Older (55 and older) Younger (18 to 54) home n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes needing someone to call (telephone) who is available 30 37.50 18 37.50 12 37.50 15 41.67 15 34.09 Participant describes being well informed and having their own support services, confident (or 10 12.50 9 18.75 1 3.13 4 11.11 6 13.64 are) to take medication at home Participant's main concern is in relation to managing side effects 8 10.00 4 8.33 4 12.50 5 13.89 3 6.82 Participant describes needing clear instructions in relation to medication usage and what to expect 8 10.00 6 12.50 3 9.38 3 8.33 6 13.64 in relation to potential adverse effects Participant describes needing someone to be physically available (immediately/quickly) if they 7 8.75 3 6.25 4 12.50 3 8.33 4 9.09 needed help

Lung Cancer 2018 Australian PEEK Study 166 Section 5

Support needed for treatment (pill All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low form) at home remote school SEIFA n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes needing someone to call (telephone) who is available 30 37.50 24 36.92 6 40.00 14 35.00 16 40.00 20 40.00 10 33.33 Participant describes being well informed and having their own support services, confident (or are) to take 10 12.50 8 12.31 2 13.33 4 10.00 6 15.00 9 18.00 1 3.33 medication at home Participant's main concern is in relation to managing side effects 8 10.00 8 12.31 0 0.00 5 12.50 3 7.50 4 8.00 4 13.33 Participant describes needing clear instructions in relation to medication usage and what to expect in relation to 8 10.00 8 12.31 1 6.67 6 15.00 3 7.50 4 8.00 5 16.67 potential adverse effects Participant describes needing someone to be physically available 7 8.75 6 9.23 1 6.67 6 15.00 1 2.50 1 2.00 6 20.00 (immediately/quickly) if they needed help

40.00

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00 Someone to call (telephone) No support - Well informed Concerns about managing Instructions on medication Physical help for help side effects usage and potential adverse effects Figure 5.13: What needs to change to feel like treatment is effective (percentage of all participants)

Lung Cancer 2018 Australian PEEK Study 167 Section 5 Service provision and affordability Table 5.22: Access to health professionals

Participants answered questions about access to Health professional N=80 Percent health services in the online questionnaire. The main Medical Oncologist 75 93.75 physician treating participants for lung cancer were medical oncologists (N=63, 79.75%), others were General Practitioner 72 90.00 treated mainly by radiation oncologists (N=7, 8.86%), Radiation oncologist 50 62.50 surgeons (N=5, 6.33%), lung specialists (N=2, 2.53%) Surgeon 41 51.25 and GPs (N=2, 2.53%). Counselling or psychological 41 51.25 support Table 5.21: Provider of treatment Respiratory physician 36 45.00

Lung cancer nurse 33 41.25 Count Health professional Percent Dietitian 32 40.00 (N=79) Registered Nurse 31 38.75 Medical oncologist 63 79.75 Physiotherapy 29 36.25 Radiation oncologist 7 8.86 Psychiatrist 10 12.50 Surgeon 5 6.33 Occupational therapy 9 11.25 Lung specialist 2 2.53 Genetic counsellor 3 3.75 General practitioner 2 2.53 Clinical trial nurse 2 2.50

Cancer care co-ordinator 1 1.25 90.00

80.00 Dermatologist 1 1.25

70.00 Haematologist 1 1.25

60.00 Orthopaedic Surgeon 1 1.25 50.00 Cardiologist 1 1.25 40.00 Percent Exercise therapist 1 1.25 30.00 Pain specialist 1 1.25 20.00 Social Worker 1 1.25 10.00 Trial coordinator 1 1.25 0.00 Medical Radiation Surgeon Lung specialist General Trial Team 1 1.25 oncologist oncologist practitioner Figure 5.14: Provider of treatment Health care system Participants had access to a medical oncologist (N=75, 93.75%), a general practitioner (N=72, 90.00%), a The majority of patients had private healthcare radiation oncologist (N=50, 62.50%), a surgeon (N=41, insurance (N=51, 63.75%), 42 (52.50%) participants 51.25%), and counselling or psychological support were treated as public patients, 22 (27.50%) as private (N=41, 51.25%) for the treatment of their lung cancer. patients and 16 (20.00%) as equally public and private patients. The majority of participants were treated in the public hospital system (N=48, 60.00%).

Lung Cancer 2018 Australian PEEK Study 168 Section 5 Table 5.25: Delay or cancel appointments due to Table 5.23: Healthcare system for lung cancer affordability. treatment Delay or cancel appointments Count Count Healthcare system Percent due to affordability (N=80) Percent (N=80) Never 66 82.50 Private health insurance Rarely 7 8.75 No 29 36.25 Sometimes 7 8.75 Yes 51 63.75 Often 0 Treated mostly as public or Very often 0 private patient Most participants were able to fill prescriptions all the Equally as a public and time (N=67, 83.75%), with eight participants (10.00%) private patient 16 20.00 rarely unable to fill prescription due to cost, and five Private patient 22 27.50 Public patient 42 52.50 participants (6.25%) sometimes unable to fill Primary hospital system prescriptions due to cost. treated in Both public and Table 5.26: Did not fill prescription due to cost private 13 16.25 Did not fill prescriptions due Count Private 19 23.75 to cost (N=80) Percent Public 48 60.00 Never 67 83.75

Rarely 8 10.00 Treated with respect during treatment Sometimes 5 6.25 Often 0

Very often 0 The majority of participants indicated that they had been treated with respect throughout their treatment (N=51, 63.75%), 25 (31.25%) participants felt they had Participants were asked if as a result of their lung been treated with respect with the exception of one or cancer diagnosis if they ever had trouble paying for two occasions, and four (5.00%) participants felt they basic necessities such as housing, food and electricity. had not been treated with respect throughout their Twenty-three participants (28.75%) found it somewhat treatment. difficult to extremely difficult to pay for basic necessities, while 30 (37.50%) did not find it difficult at Table 5.24: Treated with respect all.

Treated with respect Count Percent Table 5.27: Difficulty paying for basic necessities throughout treatment (N=80) As a result of lung cancer diagnosis, No 4 5.00 Count difficult to pay for basic necessities Percent Yes 51 63.75 (N=80) such as housing, food, electricity Yes, with the exception of Not at all difficult 30 37.50 one or two occasions 25 31.25 Slightly difficult 27 33.75 Somewhat difficult 10 12.50 Lung cancer cost implications Moderately difficult 10 12.50 Extremely difficult 3 3.75

Participants were asked about costs/affordability issues associated with lung cancer. The majority of Nine participants (11.25%) have had to pay for participants have never missed medical appointments additional carers for themselves or their family due to cost (N=66, 82.50%), seven participants (8.75%) members as a result of their diagnosis with lung cancer. rarely, and seven participants (8.75%) sometimes missing appointments due to cost. Table 5.28: Need to pay for additional carers As a result of lung cancer diagnosis, Count had to pay for additional carers for Percent (N=80) myself or family No 71 88.75 Yes 9 11.25

Lung Cancer 2018 Australian PEEK Study 169 Section 5

The estimated monthly expenses due to lung cancer The work status changed due to the lung cancer was reported, four participants (6.56%) had no out of diagnosis for some of the partners or main carers of pocket expenses, 14 (22.95%) spent under $100 a participants . A drop in income for partners and main month and 21 (34.34%) spent between $101 and $500, carers was due to quitting work (N=4, 5.13%), a and 14 participants (22.96%) spent more than $501. reduction in working hours (N=9, 11.54%), or from taking leave without pay (N=8, 10.26%). Sixteen Table 5.29: Monthly expenses due to lung cancer (20.51%) partners and main carers were retired or not Estimate of monthly expenses due to lung Count employed at time of lung cancer diagnosis, and 32 Percent cancer (N=61) (41.03%) had no change to their employment status. 0 4 6.56 1 to 100 14 22.95 Table 5.31: Partner/main carer change to employment 101 to 500 21 34.43 due to lung cancer 501 to 1000 7 11.48 Partner/Carer work status changes (More N=78 Percent 1001 to 5000 7 11.48 than one option is possible) Not sure 8 13.11 My partner/carer had to quit their job 4 5.13 My partner/carer reduced the number of Employment/income changes due to lung cancer hours of work 9 11.54 My partner/carer took leave from work without pay 8 10.26 The work status for a number of participants changed My partner/carer took leave from work with pay 14 17.95 due to their diagnosis with lung cancer. A number of My partner/carer was retired/did not have a participants experienced a drop in income through job when I was diagnosed 16 20.51 quitting work (N=27, 33.75%), reducing hours (N=19, The employment status of my partner/carer status has not changed since I was diagnosed 32 41.03 23.75%), or take leave without pay (N=15, 18.75%). Thirteen (16.25%) participants accessed their superannuation early due to lung cancer. Five Participants indicated the estimated monthly income participants (6.25%) had no changes to employment reduction due to lung cancer, 24 participants (32.00%) status, and 19 (23.75%) were not employed or were lost more than $1000 a month, and the income of retired when they were diagnosed with lung cancer. seven (6.67%) participants was reduced by more than $5000. Table 5.30: Changes to employment due to lung cancer Table 5.32: Estimated monthly family income Work status changes (more than one N=80 Percent reduction option is possible) Estimated monthly income reduction Count Percent I have had to quit my job 27 33.75 of family income ($AUD) (N=75) I have reduced the number of hours that I work 19 23.75 0 0 0.00 I have taken leave from work without 1 to 100 6 8.00 pay 15 18.75 101 to 500 7 9.33 I have taken leave from work with pay 5 6.25 501 to 1000 9 12.00 My work status has not changed since I 1001 to 5000 24 32.00 was diagnosed with lung cancer 5 6.25 5001 or more 7 9.33 I was retired or did not have a job when Not sure 5 6.67 I was diagnosed with lung cancer 19 23.75 I have accessed my Superannuation early due to my lung cancer 13 16.25

Lung Cancer 2018 Australian PEEK Study 170 Section 6 Section 6 Information and communication

Lung Cancer 2018 Australian PEEK Study Section 6

Section 6: Information and communication

Information accessed

The most common responses were accessing information from Australian charities (n=37; 46.25%), and accessing information through online forums (n=36; 45.00%). There were 19 participants (23.75%) that described accessing information from Google (internet), 16 participants (20.00%) that described accessing information through face-to- face support groups and 15 participants (18.75%) that described accessing medical journals and/or research articles, including keeping up to date on clinical trials.

Information that has been helpful

Information that has not been helpful

Information preferences

Timing of information

Health professional communication

172 Lung Cancer 2018 Australian PEEK Study Section 6 Knowledge and confidence

Partners in health – overall score

Partners in health - by lung cancer stage

Partners in health – by distant metastases

Partners in health – by brain metastases

Partners in health – by energy/fatigue

173 Lung Cancer 2018 Australian PEEK Study Section 6 Partners in health – by pain

• Pain was described as those that scored above average for the cohort in the SF36 Pain scale, less pain (N=48, 60.00%) compared to those that scored average or below, more pain (N=32, 40.00%). • The “Partners in health: coping”, median scores for participants with less pain were significantly higher than those with more pain, however all scores were in the second highest quintile for each group, indicating good coping for both groups. • The “Partners in health: knowledge”, and “Partners in health: recognition and management of symptoms” median scores for participants with better energy/fatigue were significantly higher than those with worse energy fatigue, however all scores were in the highest quintile for each scale, indicating very good knowledge , and very good recognition and management of symptoms for both groups. • The “Partners in health: total score” mean score for participants with less pain was in the in the highest quintile indicating very good knowledge and confidence for managing their own health.. These scores were significantly higher compared to the mean score for participants with more pain was in the second lowest highest indicating good knowledge and confidence for managing their own health.. Partners in health – by gender

• The gender of participants, females (N=66, 82.50%) were compared with males (N=14, 17.50%). • No statistically significant differences were observed between males and females for any PIH scale.

Partners in health – by age

• The age of the participants, those that were 55 and older, older (55 and older) (N=36, 45.00%) were compared with those that were aged between 18 and 54, younger (18 to 54) (N=44, 55.00%). • No statistically significant differences were observed between older and younger participants for any PIH scale.

Partners in health – by location

Partners in health – by education

• Education status, between those with a university degree, university (N= 40, 50.00%), and those with trade or high school qualifications, trade or high school (N=40, 50.00%) • No statistically significant differences were observed between those with university education and those with trade or high school qualifications for any PIH scale.

Partners in health – by SEIFA

• Socio-economic Indexes for Areas (SEIFA) scores range from 1 to 10, a higher score denotes a higher level of advantage. Those with a higher SEIFA score of 7-10 , high SEIFA (N=50, 62.50%) compared to those with a mid to low SEIFA score of 1-6, mid-low SEIFA (N=30, 37.50%). Comparisons of PIH scales were made by Socio-economic Indexes for Areas (SEIFA), SEIFA scores range from 1 to 10, a higher score denotes a higher level of advantage. • No statistically significant differences were observed between those that lived in a higher SEIFA area compared to those that lived in an area with lower SEIFA scores for any PIH scale.

174 Lung Cancer 2018 Australian PEEK Study Section 6 Information given by health care professionals

• Participants were asked about what type of information they were given by healthcare professionals and what type of information they searched for independently: • Information about treatment options (N=62, 77.50%), psychological/social support (N=41, 51.25%), and disease management (N=38, 47.50%) were most frequently given to participants by healthcare professionals. • Information about complimentary therapies (N=9, 11.25%), and interpreting test results (N=14, 17.50%) were give least often. • Two participants (2.50%) indicated that they received very little information from health professionals about lung cancer

Information searched for independently

• Participants were asked about what type of information they searched for after receiving information from healthcare professionals • Information about complementary therapies (58.75%) was most often searched for, followed by disease management (56.25%) and treatment options (53.75%). • The least searched for topic was hereditary considerations genes or genomic biomarker information (22.50%).

Gaps in Information obtained

• The largest gaps in information, where information was neither given to patients nor searched for independently were how to interpret test results (n=35, 43.75%), and hereditary considerations genes or genomic biomarker information (n=48, 60.00%) (Figure 6.72). • Participants were given most information either from healthcare professionals or independently for treatment options (N=93, 78.00%) and disease management (N=67, 91.25%) (Figure 6.72). • Complementary therapies (N= 41, 51.25%) was the topic that was most searched for independently following no information from health professionals (Figure 6.72).

Most trusted information sources

• Participants were asked to rank which information source that they most trusted. Across all participants, information from the participants’ hospital or clinic was most trusted followed by information from non- profit or charitable organisations. Information from pharmaceutical companies was least trusted.

175 Lung Cancer 2018 Australian PEEK Study Section 6 Access to information Then when I discovered the Lung Foundation and got to speak to NAME, I've only ever called her once. The The most common responses were accessing impact of the conversation with her was…Although information from Australian charities (n=37; 46.25%), I've met her since the Sydney Conference, made me and accessing information through online forums relax a lot because she was informed, she pointed me (n=36; 45.00%). There were 19 participants (23.75%) in the direction of some good information and the that described accessing information from Google Lung Foundation have good information on their (internet), 16 participants (20.00%) that described website. Participant 52 accessing information through face-to-face support groups and 15 participants (18.75%) that described The lung foundation have been really great in terms accessing medical journals and/or research articles, of their website and that's one of the main places I've including keeping up to date on clinical trials. gone. My doctor gave me the link to the Lung Foundation... Also, the Cancer Council in terms of just, In relation to sub-group variations, participants with not so much lung cancer, but cancer in general…that's stage I to III lung cancer or no distant metastases been very good. Participant 62 (35.29%) reported accessing information from Australian charities, less frequently than the general Participant describes accessing information through population (46.25%). Participants with stage I and II online forums (including Facebook) lung cancer (58.82%) described accessing information through online forums, more frequently than the I go on forums to hear what side effects and general population (45.00%), while those with more symptoms other people are having, so general word pain (34.38%), those in regional or remote areas of mouth from other patients. Did you want more (20.00%) and those from mid to low SEIFA (33.33%) specific details of where I get my information from? If described this less frequently. Participants with more there's a specific source that's been really good, pain (34.38%) described accessing information from patient side but that's the type of information you've Google (internet), more frequently than the general gone for so it's excellent. Participant 18 population (23.75%). Participants with stage III lung cancer (5.88%) described accessing information The Facebook groups that I'm a member of, they've through face-to-face support groups, less frequently got pointed to an incredible amount of information. than the general population (20.00%), while those with Participant 54 brain metastases (31.81%) reported this more frequently. Participants with stage III lung cancer It was only through my own searching, and (0.00%) described accessing information from their networking, and going onto…what was really, really specialist, less frequently than the general population positive was the Facebook groups, for my particular (18.75%). Participants with brain metastases (31.82%) type of cancer, where actual research articles are described accessing medical journals, more frequently being shared, and really positive information. Yes, I than the general population (18.75%), while those with think that's probably been my best source of other metastases reported this less frequently (8.33%). information. Participant 67 Participants with other metastases (25.00%) described accessing information from their specialist, more Participant describes accessing information from frequently than the general population (12.50%). google (or generally internet)

Participant describes accessing information from Okay. I just research crazy. I just look everywhere. Australian charities (Lung Foundation, Cancer Council; Google and you just go from there and you find one can be pamphlets) thing takes you to another thing or gives you a new word and then you're on a new. Yes. Participant 26 Well, mainly from NAME at Lung Cancer Foundation. She put me up, she sent me a lot of information and My oncologists laughed at me and say I've been she also…I rang her out a few times so that in between talking to Dr. Google. [laughs] But I do feel that I have diagnosis and the operation and she put me onto the had access to information, yes. Participant 30 head lung cancer nurse at the hospital I was going to and everything. She was really good as well. She gave Nothing. Only what I've Googled. I didn't even realize me a few web, like the lung cancer website to look at there were lung cancer oncologists. Participant 66 and told me not to look at certain ones and the right ones to have a look at. That was good. Participant 7

176 Lung Cancer 2018 Australian PEEK Study Section 6

Participant describes accessing information through Participant describes accessing medical journals face-to-face support groups and/or research articles (also includes keeping up to date on clinical trials) I ended up going to an actual, an evening at the centre that was about a lung cancer and that's how I met It is just a matter of knowing where to find it. It took NAME and got involved in actually forming this, a lung me a while to find the best sources of information but cancer support group, which has been really good. I think I found that now, so I read trial data that comes Participant 12 back from trials or a journal article, from medical journal articles. Participant 3 I went to a lung patient forum before a lung cancer conference in LOCATION, I went to a patient forum for Every article I read, obviously I only read scientific the day before the cancer conference started and I articles, Google Scholar and PubMed and things like met other ALK patients there. Participant 47 that, but there was nothing on there that you can read. Participant 19 I’ve got a little lung cancer support group that I had from LOCATION which seems to be really good for Google is really the only place where online materials sharing information with each other. Many things like and I sort of went back to school in the sense where I that, like just looking up stuff and trying to keep up sort of learned all the basics of how to read a Medical with what’s around, especially for my type of lung Journal article. I'm lucky that I had a science degree so cancer. Participant 58 I can kind of read scientific papers but I still didn't know a lot of the jargons and I had to learn that and then go to the journals and read and understand. Participant 74

Table 6.1: Information accessed Information accessed All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes accessing information from Australian charities (Lung Foundation, Cancer 37 46.25 5 29.41 7 41.18 25 54.35 12 35.29 Council; can be pamphlets) Participant describes accessing information 36 45.00 10 58.82 7 41.18 19 41.30 17 50.00 through online forums (including Facebook) Participant describes accessing information from google (or generally internet) 19 23.75 3 17.65 5 29.41 11 23.91 8 23.53 Participant describes accessing information through face-to-face support groups 16 20.00 4 23.53 1 5.88 11 23.91 5 14.71 Participant describes accessing medical journals and/or research articles (also includes keeping up 15 18.75 3 17.65 3 17.65 9 19.57 6 17.65 to date on clinical trials) Participant describes accessing information from their specialist 10 12.50 2 11.76 0 0.00 8 17.39 2 5.88 Participant describes accessing information on the 8 10.00 3 17.65 1 5.88 4 8.70 4 11.76 internet (International websites)

177 Lung Cancer 2018 Australian PEEK Study Section 6 Table 6.1: Information accessed (continued) Information accessed All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes accessing information from Australian charities (Lung Foundation, 37 46.25 12 54.55 13 54.17 12 35.29 17 40.48 20 52.63 Cancer Council; can be pamphlets) Participant describes accessing information 36 45.00 10 45.45 9 37.50 17 50.00 17 40.48 19 50.00 through online forums (including Facebook) Participant describes accessing information from google (or generally internet) 19 23.75 4 18.18 7 29.17 8 23.53 9 21.43 10 26.32 Participant describes accessing information through face-to-face support groups 16 20.00 7 31.82 4 16.67 5 14.71 10 23.81 6 15.79 Participant describes accessing medical journals and/or research articles (also includes keeping up to date on clinical 15 18.75 7 31.82 2 8.33 6 17.65 9 21.43 6 15.79 trials) Participant describes accessing information from their specialist 10 12.50 2 9.09 6 25.00 2 5.88 8 19.05 2 5.26 Participant describes accessing information 8 10.00 2 9.09 2 8.33 4 11.76 3 7.14 5 13.16 on the internet (International websites)

Information accessed All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes accessing information from Australian charities (Lung Foundation, Cancer 37 46.25 19 39.58 18 56.25 19 52.78 18 40.91 Council; can be pamphlets) Participant describes accessing information 36 45.00 25 52.08 11 34.38 15 41.67 21 47.73 through online forums (including Facebook) Participant describes accessing information from google (or generally internet) 19 23.75 8 16.67 11 34.38 6 16.67 13 29.55 Participant describes accessing information through face-to-face support groups 16 20.00 8 16.67 8 25.00 7 19.44 9 20.45 Participant describes accessing medical journals and/or research articles (also includes keeping up 15 18.75 12 25.00 3 9.38 7 19.44 8 18.18 to date on clinical trials) Participant describes accessing information from their specialist 10 12.50 6 12.50 4 12.50 5 13.89 5 11.36 Participant describes accessing information on the internet (International websites) 8 10.00 6 12.50 2 6.25 5 13.89 3 6.82

Information accessed All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes accessing information from Australian charities (Lung Foundation, Cancer Council; can 37 46.25 29 44.62 8 53.33 16 40.00 21 52.50 23 46.00 14 46.67 be pamphlets) Participant describes accessing information through online forums 36 45.00 33 50.77 3 20.00 16 40.00 20 50.00 26 52.00 10 33.33 (including Facebook) Participant describes accessing information from google (or generally 19 23.75 16 24.62 3 20.00 9 22.50 10 25.00 9 18.00 10 33.33 internet) Participant describes accessing information through face-to-face 16 20.00 12 18.46 4 26.67 9 22.50 7 17.50 11 22.00 5 16.67 support groups Participant describes accessing medical journals and/or research articles (also 15 18.75 12 18.46 3 20.00 6 15.00 9 22.50 12 24.00 3 10.00 includes keeping up to date on clinical trials) Participant describes accessing information from their specialist 10 12.50 7 10.77 3 20.00 3 7.50 7 17.50 5 10.00 5 16.67 Participant describes accessing information on the internet 8 10.00 7 10.77 1 6.67 5 12.50 3 7.50 5 10.00 3 10.00 (International websites)

178 Lung Cancer 2018 Australian PEEK Study Section 6 50.00

45.00

40.00

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00 Charities Online forums Google Support groups Medical Specialist Internet (including (Face-to-face) journals/keeping up (International) Facebook) to date on clinical trials Figure 6.1: Information accessed (% of all participants)

Information that was helpful tell me everything that I think I need to know. Participant 52 There was a fairly even distribution in relation to the information that participants found helpful. This Oh, talking to my doctor. Talking to my doctor, having included talking to their doctor/specialist (n=14; faith in him, trusting him, talking to the radiation, to 17.50%), information from charities (n=14; 17.50%), the chemo and all that. That's the hard part. support groups or patient information days (n=12; Participant 70 15.00%), online support groups (n=12; 15.00%) and information that is specific to the type of lung cancer Participant describes the information from charities they have (n=11; 13.75%). as most helpful

There was only one sub-group variation. Participants It was the booklet they [Cancer Council] sent out from mid to low SEIFA (3.33%) described information which was really good. I really enjoyed it. It was that is specific to the type of lung cancer they have, less simple to read. I enjoyed that one. It explained things frequently than the general population (13.75% quite much better without all the medical terms which most of the time I couldn't understand. I thought it Participant describes talking to their doctor/specialist was really good. Participant 41 as being particularly helpful Also, I contacted the Cancer Council. They send out a The information that my oncologist, semi-specialist package with a whole lot of booklets. I then requested oncologist, gave me, so the people that are more lung an additional couple of booklets so I had all those to cancer oncologists. The information they gave me has read, very fantastic. NAME at the Lung Foundation is been really helpful as well. Participant 23 fantastic with information. You'll always get some support. You can always get more information every Talking to the lung specialist NAME, she is fantastic, time you go there. By doing your own research and because [coughs] she talks, she's really open, and she reading what you can get hold of, you then have more just talks about stuff and she explains it. Also the ability to ask more questions of your oncologist. I radio oncologist, he's brilliant, he explains a lot, but I would say written literature would be one of the main realize I need to read the results of the tests myself to one. Participant 56 really know what questions I need to ask if they don't 179 Lung Cancer 2018 Australian PEEK Study Section 6 The step-by-step booklet and pamphlet that the Lung they're not always in Australia, and at the same, it Foundation produced, that was really good. When I came to grow. There is a lot of information on there first got their packet, it was just so refreshing. Their as well. A lot of videos and things that I haven't seen first information pack with the ABC of everything from here in Australia or that I know about. Participant 68 them. Participant 69 Participant describes information that is specific to Participant describes support groups or patient the type of lung cancer they have information days as being particularly helpful Information that's specifically related to the type of I think, believe it or not, the knowing that something lung cancer that I've got, and specifically related to that you have felt, somebody else feels it too, believe treatments that might be able to follow the one I'm it or not. Is that okay? The fact that you still hurt six on now, because there's no approved drug after what weeks afterwards. "Oh, that's understandable." It I'm on now. Participant 2 feels like it's- If you actually have somebody who's been through it themselves. When I joined that Things that are specific to my type of lung cancer, so support group, yes…that you talked to other people things to do with the EGFR it's helpful. Participant 28 that they knew exactly how you felt. Yes, I think that made a big difference. Participant 12 Knowing the type of cancer. The type of cancer you have and what else is out there. Previously, I wouldn't I went to the Lung Cancer Foundation conference in have known that are lots of different types of lung LOCATION this year. We were able to access some of cancer. I would have thought "Okay there's different the presentations by researchers and doctors running types of cancer." I didn't know that there was research. I found that useful in terms of, at least, different types of lung cancer. There's different giving me a bit of hope. It seemed to be that there was treatments that target different mutations. There's a lot of work happening in this area, which made me also a lot of information in terms of a lot of trials feel a bit better. Participant 37 happening. There's a lot of immunotherapy, there's targeted and there's chemo. There's also a lot of trials What would be the most helpful? The most helpful going on with different combination of each of those would be what other people's experiences have been treatments as well. Participant 35 and how they've combatted them. How they have overcome their challenges. This is a very frustrating I stopped looking at that after a while, I just thought disease because you can feel good one day and feel this isn’t achieving anything. Then I started trying to like shit the next. Participant 80 understand, "Okay, I’m now EGFR." so then because it’s like a bit of a niche type of lung cancer, it was Participant describes online support groups (including easier to look at that and look at the treatment Facebook) as being helpful options that are available for that, and what those treatment options are, and what the general lifespan To be honest, the Facebook group I’m on, they’ve been is and side effects, et cetera. Participant 54 the greatest source of information across clinical trials and research. Yes, the pulling of information from there. Participant 40 Probably what I get from this Facebook group like being able to ask questions and have people who know stuff answer them or directly find my way and find the answers. Participant 43

Probably the Facebook groups that people who are going through treatment and diagnosis. Just listening to what scans they're having done or who they're speaking to or recommendations from their doctors or oncologists. They've been really interesting and not that a lot of it apply to me now, but I think eventually if I do end up going on immunotherapy, they're going to be a great source of information. I find Inspire really good. I do a lot of searching on there because they have conversations with real people even though 180 Lung Cancer 2018 Australian PEEK Study Section 6 Table 6.2: Information that has been helpful Information that has been helpful All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes talking to their doctor/specialist as being particularly helpful 14 17.50 2 11.76 4 23.53 8 17.39 6 17.65 Participant describes the information from charities as most helpful 14 17.50 2 11.76 3 17.65 9 19.57 5 14.71 Participant describes support groups or patient 12 15.00 4 23.53 4 23.53 4 8.70 8 23.53 information days as being particularly helpful Participant describes online support 12 15.00 2 11.76 2 11.76 8 17.39 4 11.76 groups(including Facebook) as being helpful Participant describes information that is specific to the type of lung cancer they have 11 13.75 1 5.88 3 17.65 7 15.22 4 11.76

Information that has been helpful All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes talking to their doctor/specialist as being particularly 14 17.50 3 13.64 5 20.83 6 17.65 7 16.67 7 18.42 helpful Participant describes the information from 14 17.50 3 13.64 6 25.00 5 14.71 6 14.29 8 21.05 charities as most helpful Participant describes support groups or patient information days as being 12 15.00 3 13.64 1 4.17 8 23.53 8 19.05 4 10.53 particularly helpful Participant describes online support groups(including Facebook) as being helpful 12 15.00 5 22.73 3 12.50 4 11.76 8 19.05 4 10.53 Participant describes information that is specific to the type of lung cancer they have 11 13.75 3 13.64 4 16.67 4 11.76 4 9.52 7 18.42

Information that has been helpful All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes talking to their doctor/specialist as being particularly helpful 14 17.50 10 20.83 4 12.50 4 11.11 10 22.73 Participant describes the information from charities as most helpful 14 17.50 8 16.67 6 18.75 7 19.44 7 15.91 Participant describes support groups or patient 12 15.00 6 12.50 6 18.75 7 19.44 5 11.36 information days as being particularly helpful Participant describes online support 12 15.00 11 22.92 1 3.13 4 11.11 8 18.18 groups(including Facebook) as being helpful Participant describes information that is specific to the type of lung cancer they have 11 13.75 6 12.50 5 15.63 6 16.67 5 11.36

Information that has been helpful All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes talking to their doctor/specialist as being particularly 14 17.50 11 16.92 3 20.00 5 12.50 9 22.50 9 18.00 5 16.67 helpful Participant describes the information 14 17.50 14 21.54 0 0.00 7 17.50 7 17.50 9 18.00 5 16.67 from charities as most helpful Participant describes support groups or patient information days as being 12 15.00 10 15.38 2 13.33 7 17.50 5 12.50 7 14.00 5 16.67 particularly helpful Participant describes online support groups(including Facebook) as being 12 15.00 11 16.92 1 6.67 4 10.00 8 20.00 10 20.00 2 6.67 helpful Participant describes information that is specific to the type of lung cancer 11 13.75 9 13.85 2 13.33 5 12.50 6 15.00 10 20.00 1 3.33 they have

181 Lung Cancer 2018 Australian PEEK Study Section 6 20.00

18.00

16.00

14.00

12.00

10.00

8.00

6.00

4.00

2.00

0.00 Talking to doctor Charities Support groups or Online forums Specifc to the type of information days (including Facebook) lung cancer Figure 6.2: Information that has been helpful percentage of all participants)

Information that was not helpful for the study of lung cancer. All those sorts of things. You say on proper ones, you're okay. Participant 2 The most common theme described by 15 participant (18.75%) was deciding for themselves what is not No, not really, because I've made a point of ignoring helpful, dismissing irrelevant information and avoiding or steering away from some of the less mainstream information that is not credible. There were also 15 advice, because there's a lot of it out there. I get, participant (18.75%) that described the statistics virtually, all my information from the internet. A lot of around survival, such as 5-year survival rate, as not it is really left field, and I just stay right away from it, being helpful, and ten participants (12.50%) that because I think it's just somebody on a rant. described other people giving their opinion as not Participant 25 being helpful. Other themes included old information as unhelpful (n=8; 10.00%) and Dr Google as being Probably, probably not, but then maybe I’ve come on unhelpful (n=7; 8.75%). such a learning curve. I just dismiss a lot of stuff that’s not relevant, I don’t bother reading it, it's like "It’s not In relation to sub-group variations, participants with relevant. I don’t need that." Once again, because stage I and II lung cancer (5.88%) described deciding for nothing’s really happened for 12 months, things have themselves what is not helpful, less frequently than the slowed down for me. I’m due for another scan, and I general population (18.75%). There were no think if that shows progression and I go onto participants with stage II lung cancer that described treatment then I’ll probably start I guess a lot more other people’s opinion as not helpful (general again. Participant 57 population 12.50%), while participants with brain metastases described this more frequently (27.27%). Participant describes the statistics around survival, like 5-year survival rate, as not being helpful Participant describes deciding for themselves what is not helpful or dismissing irrelevant information or I'll tell you what I don't think is helpful, the current five avoiding information that is not credible year statistics for survival around lung cancer, because you tend to read them up on the web. They're Well, there's a few dodgy websites, but you learn very up there as stark facts, that probably don't put any quickly to steer away from those and to focus only on context in there, around how things are improving medical research organizations, for example, and with things like targeted therapy and universities and ASCO and international associations immunotherapy. Participant 22

182 Lung Cancer 2018 Australian PEEK Study Section 6 I won't go into statistics. I won't go to anything that's would do that. They said it was part of my genes. negative when I'm looking at things I haven't and None of my families ever received it. It's just the one- even with the doctors, I feel I don't want to know. I've off because I was a smoker. That's all I think I can think had enough doctor…They crunch the numbers to you of. Participant 17 and I'm like, "I don't want to know.” Participant 26 Some of those non-scientific things. I had somebody Some of the stats and stuff is really in your face when put in my letterbox, I have no idea how they knew you…I suppose if I'm really thinking about it, some of where I lived, some information about bicarb of soda, the information that gives statistics about how many that it cures cancer. It was a handwritten letter, people live and die when you have lung cancer is not "Here's the website," and you have these workshop helpful in the fact that, well, [chuckles] it just throws evenings that you can come to and get this you into misery right from the beginning, I mean, information about you need to get medical-grade you're in misery anyway. Participant 72 sodium bicarbonate and blah blah blah. It made me really angry. Participant 37 Participant describes other people giving their opinion as not being helpful (especially things that are Only from people. Only from the public who don't not evidence-based) have any idea [laughs] what it is. I'd already discussed that people thinking that you were smoker, but it's People trying to tell me that stuff like herbal medicine, not relevant really to this. Participant 38 Chinese medicine is the answer. That what I need is to smoke dope. They said, "Oh, marijuana will help you," and I said "Oh no, I don't do that." They said a drink

Table 6.3: Information that was not helpful Information that has not been helpful All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes deciding for themselves what is not helpful/dismissing irrelevant information/avoiding information that is not 15 18.75 1 5.88 2 11.76 12 26.09 3 8.82 credible Participant describes the statistics around survival, like 5-year survival rate, as not being 15 18.75 2 11.76 3 17.65 10 21.74 5 14.71 helpful Participant describes other people giving their opinion as not being helpful 10 12.50 2 11.76 0 0.00 8 17.39 2 5.88 Participant describes old information as unhelpful 8 10.00 1 5.88 3 17.65 4 8.70 4 11.76 Participant describes 'Dr Google' or generally search for information on the internet as not 7 8.75 1 5.88 0 0.00 6 13.04 1 2.94 being helpful Participant doesn’t know of any unhelpful 7 8.75 3 17.65 1 5.88 3 6.52 4 11.76 information

Information that has not been helpful All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes deciding for themselves what is not helpful/dismissing irrelevant information/avoiding information 15 18.75 6 27.27 6 25.00 3 8.82 5 11.90 10 26.32 that is not credible Participant describes the statistics around survival, like 5-year survival rate, as not 15 18.75 4 18.18 6 25.00 5 14.71 9 21.43 6 15.79 being helpful Participant describes other people giving their opinion as not being helpful 10 12.50 6 27.27 2 8.33 2 5.88 5 11.90 5 13.16 Participant describes old information as unhelpful 8 10.00 3 13.64 1 4.17 4 11.76 5 11.90 3 7.89 Participant describes 'Dr Google' or generally search for information on the 7 8.75 3 13.64 3 12.50 1 2.94 3 7.14 4 10.53 internet as not being helpful Participant doesn’t know of any unhelpful information 7 8.75 2 9.09 1 4.17 4 11.76 6 14.29 1 2.63 183 Lung Cancer 2018 Australian PEEK Study Section 6 Table 6.3: Information that was not helpful (continued) Information that has not been helpful All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes deciding for themselves what is not helpful/dismissing irrelevant information/avoiding information that is not 15 18.75 9 18.75 6 18.75 8 22.22 7 15.91 credible Participant describes the statistics around survival, like 5-year survival rate, as not being 15 18.75 9 18.75 6 18.75 4 11.11 11 25.00 helpful Participant describes other people giving their opinion as not being helpful 10 12.50 6 12.50 4 12.50 5 13.89 5 11.36 Participant describes old information as unhelpful 8 10.00 6 12.50 2 6.25 1 2.78 7 15.91 Participant describes 'Dr Google' or generally search for information on the internet as not 7 8.75 4 8.33 3 9.38 0 0.00 7 15.91 being helpful Participant doesn’t know of any unhelpful 7 8.75 2 4.17 5 15.63 3 8.33 4 9.09 information Information that has not been All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low helpful remote school SEIFA n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes deciding for themselves what is not helpful/dismissing irrelevant 15 18.75 11 16.92 4 26.67 9 22.50 6 15.00 10 20.00 5 16.67 information/avoiding information that is not credible Participant describes the statistics around survival, like 5-year survival 15 18.75 13 20.00 2 13.33 8 20.00 7 17.50 10 20.00 5 16.67 rate, as not being helpful Participant describes other people giving their opinion as not being 10 12.50 7 10.77 3 20.00 6 15.00 4 10.00 5 10.00 5 16.67 helpful Participant describes old information 8 10.00 5 7.69 3 20.00 2 5.00 6 15.00 5 10.00 3 10.00 as unhelpful Participant describes 'Dr Google' or generally search for information on the 7 8.75 6 9.23 1 6.67 3 7.50 4 10.00 5 10.00 2 6.67 internet as not being helpful Participant doesn’t know of any unhelpful information 7 8.75 6 9.23 1 6.67 3 7.50 4 10.00 3 6.00 4 13.33

20.00

18.00

16.00

14.00

12.00

10.00

8.00

6.00

4.00

2.00

0.00 Dismissing Stats, 5- year survival Other people's opinions Old info Dr Google/generally No unhelpful irrelevant/decide for searching internet themselves/avoid not credible

Figure 6.3: Information that was not helpful (% of all participants)

184 Lung Cancer 2018 Australian PEEK Study Section 6 Information preferences (Format of information) A bit of both. I think that online information, it Participants were asked whether they had a preference encompasses a lot of things, and if you can’t get for information online, talking to someone, in written it…Sometimes talking to someone, you can go down (booklet) form or through a phone App. Overall, the tracks which you don’t know that you want to go most common theme was talking to someone (n=51; down. Does that make sense? Participant 57 63.75%) which included participants that described talking to someone as first choice (n=27) and a I always like talking to someone first. I feel more preference for talking to someone plus online flexible that I can ask the questions that I want and try information (n=24). There were 17 participants and find out about what's important to me. Then (21.25%) that described a preference for online secondly, there are some fantastic online resources, information, within this, eleven participants preferred particularly some international resources online. Of this due to its accessibility. There were also seven course, there's always PubMed and looking up participants (8.75%) that described appreciating apps different articles and such. Participant 69 (complementary to other methods). Participant describes a preference for online In relation to sub-group variations, participants with information due to its accessibility stage III lung cancer (17.65%) described a preference for talking to someone plus online information, less So yeah online would probably be the best and I frequently than the general population (30.00%). usually just screenshot things as well. So it's there and it's easily accessible. Yeah just yeah if I've got a Participant describes talking to someone as first question I just I just go on Google and you can google choice (may also like other options but talking is check Google ask Google whatever it's called. first/main thing spoken about) Participant 3

Talking to someone would be better. I think booklets Online information because I can access it when I am are just standard. It'll be just standard, but not really ready and when I’m free to do so. Participant 18 tailored for you specifically. Talking to someone could get more information especially if the person you're Online information for me, because it's on hand. It's talking has got that information for you or can quick. I can sort through the information on hand recommend someone you can speak to or see. You can myself and dismiss what may be relevant or explain yourself more person to person, reading a irrelevant, and I like to get as much information as I booklet. Participant 31 can before I speak to anybody as well, so that I feel like I'm coming from a point of information, rather Probably talking to someone because then I'm able to than seeking out the information from somebody else. ask the questions and if I don't understand what's I'd rather go to, say my specialist with an idea and being written, I can't really ask anyone what that have as much knowledge behind that idea as I can, means. If I'm talking to someone, at least I can express prior to speaking to him, so then I have more of an exactly what I mean. Participant 36 educated understanding of what we're going to discuss. Online research, for me, is very handy I prefer talking to someone and I would like that [laughs]. I rely on it a lot. Participant 44 backed up with written information. My wife is a good historian, she takes notes. I listen and take most of it So far, it's been using the internet. You're the first in. If things can be followed up in writing, that's useful person I've talked to on the phone about it. I don't for me. Participant 77 know anybody else who has lung cancer that I talk to. The internet it's been the most useful. It's convenient Participant describes a preference for talking to and it's easier to find somebody. One of the Facebook someone plus online information groups that I belong to, is for people who have this specific EGFR gene mutation. They share a lot of…it's It's good to talk to someone, because you can put a not all touchy, feely stuff, it's stuff like, "This is a new face to who's saying what. Also, it's good to actually study," or "This is information about the new clinical read it online. Because to me, if it's online you can re- trial that's going." It keeps me up to date on what's read it. So the thing is sometimes you have a going on. Being in LOCATION, there's not really that conversation with someone and then I'll forget what I many places or people to talk to, who have it, or know actually spoke to them about, because my memory about it, or want to know about it. That's where I was isn't all that great as well. Participant 35 headed. Participant 60 185 Lung Cancer 2018 Australian PEEK Study Section 6 Table 6.4: Information preferences Information preferences All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes talking to someone as first choice (may also like other options but talking is 27 33.75 5 29.41 6 35.29 16 34.78 11 32.35 first/main thing spoken about) Participant describes a preference for talking to 24 30.00 5 29.41 3 17.65 16 34.78 8 23.53 someone plus online information Participant describes a preference for online information due to its accessibility 11 13.75 2 11.76 2 11.76 7 15.22 4 11.76 Participant describes appreciating apps - complementary to other methods 7 8.75 2 11.76 3 17.65 2 4.35 5 14.71 Participant describes a preference for online 6 7.50 1 5.88 2 11.76 3 6.52 3 8.82 information (no rationale provided)

Information preferences All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes talking to someone as first choice (may also like other options but 27 33.75 7 31.82 9 37.50 11 32.35 16 38.10 11 28.95 talking is first/main thing spoken about) Participant describes a preference for 24 30.00 8 36.36 8 33.33 8 23.53 10 23.81 14 36.84 talking to someone plus online information Participant describes a preference for online information due to its accessibility 11 13.75 4 18.18 3 12.50 4 11.76 6 14.29 5 13.16 Participant describes appreciating apps - complementary to other methods 7 8.75 1 4.55 1 4.17 5 14.71 2 4.76 5 13.16 Participant describes a preference for online information (no rationale provided) 6 7.50 2 9.09 1 4.17 3 8.82 6 14.29 0 0.00

Information preferences All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes talking to someone as first choice (may also like other options but talking is 27 33.75 16 33.33 11 34.38 9 25.00 18 40.91 first/main thing spoken about) Participant describes a preference for talking to 24 30.00 16 33.33 8 25.00 15 41.67 9 20.45 someone plus online information Participant describes a preference for online information due to its accessibility 11 13.75 7 14.58 4 12.50 3 8.33 8 18.18 Participant describes appreciating apps - complementary to other methods 7 8.75 3 6.25 4 12.50 2 5.56 5 11.36 Participant describes a preference for online information (no rationale provided) 6 7.50 4 8.33 2 6.25 3 8.33 3 6.82

Information preferences All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes talking to someone as first choice (may also like other options but talking is first/main 27 33.75 23 35.38 4 26.67 15 37.50 12 30.00 15 30.00 12 40.00 thing spoken about) Participant describes a preference for talking to someone plus online 24 30.00 19 29.23 5 33.33 15 37.50 9 22.50 15 30.00 9 30.00 information Participant describes a preference for online information due to its 11 13.75 9 13.85 2 13.33 4 10.00 7 17.50 8 16.00 3 10.00 accessibility Participant describes appreciating apps 7 8.75 5 7.69 2 13.33 3 7.50 4 10.00 4 8.00 3 10.00 - complementary to other methods Participant describes a preference for online information (no rationale 6 7.50 6 9.23 0 0.00 1 2.50 5 12.50 5 10.00 1 3.33 provided)

186 Lung Cancer 2018 Australian PEEK Study Section 6 40.00

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00 Talking to somone as first Talking to someone plus Online Apps as complementary to Online information/no choice (may also like other online information information/accessibility other methods reason options but talking is first/main thing spoken about) Figure 6.4: Information preferences – Format (% of all participants)

Information preferences (Timing of information) As soon as I found out. I was researching before because I had an inkling that things that things The most common time that participants described weren't right. There's no such thing as information being receptive to receiving information was at the overload. Doctor overload because you're going from time of diagnosis (n=28, 35.00%) and this was followed one doctor to another doctor, to another doctor by participants describing being receptive to obviously to get everything sorted out before you information following the shock of diagnosis (n=14; started your chemo. I don't think there's such thing for 17.50%). There were 11 participants (13.75%) that me anyway, that the more information I had, described not being receptive to information for information is power. You know what questions to ask months after diagnosis and eight participants (10.00%) as well too. Participant 31 that described being receptive to information continuously throughout their experience. I was ready right at the beginning to get more information than I was given. I was given pretty much In relation to sub-group variations, participants with nothing. The drawing of a lung with a little scribbled stage III lung cancer (52.94%) described being in area showing where the tumour was and a name receptive to information at diagnosis, more frequently non-small cell lung cancer and that was it, that's all I than the general population (35.00%). Participants was given, it was pitiful. I would have climbed over with stage III lung cancer (5.88%) described being the information if they'd given it to me then. I would receptive to information after the shock of diagnosis, have been just stuck right into it. Participant 59 less frequently than the general population (17.50%). Participant describes being receptive to information Participant describes being receptive from the after the shock of diagnosis beginning (diagnosis) Probably as soon as I got over the first shock of being I was very curious right from the start, I think, as to diagnosed. It would have been maybe a couple of what was happening. Participant 6 weeks or something because then I just wanted to find out as much as I could about it. Participant 1 187 Lung Cancer 2018 Australian PEEK Study Section 6

I have to say now, in the beginning I was…My Months later, you can look back and then you can receptiveness was poor as I wasn't able…I didn't even see…go through the timeline and what you had done ask what I had, I didn't want to know what I had... It's and understand it. Even though you're told at the time been that way ever since and I think now I'm a little and you sort of understand it at the time, the process. more able to ask questions, whereas before I was You're just in such an emotional state, but you don't completely frightened of asking anything to do with understand it like you do six or 12 months later. When diagnosis, prognosis, the future. It's been a bit at the I look back now in and I can see all the steps that I time. I've only been able to develop so much. took, but at the time I was taking them I was too Participant 13 emotionally…Your emotions are hardened. They want to…understand what's going on and say after a year Most receptive was after the initial shock of receiving you could look back and you think, "Oh now I can see. the diagnosis, and after a couple of visits to the You become savvy, you could become typically savvy oncologist. I started to realize that I could absorb the and, yes you do, you do. Participant 56 information and find what I would determinedly to be more useful and could ask questions, probing the About two or three months in or maybe just after the things more so. That would be then. Participant 60 first treatment. It all gets flushed in the wash the first couple of months. You're in a bit of a washing machine Participant describes not being receptive for months with all the information. A lot of it doesn't stick. post diagnosis Participant 71

Not for a couple of months after the diagnosis because results are shocking and it all seems to happen so quickly. Participant 47

Table 6.5: Information preferences (Timing) Timing of information All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes being receptive from the beginning (diagnosis) 28 35.00 5 29.41 9 52.94 14 30.43 14 41.18 Participant describes being receptive to information after the shock of diagnosis 14 17.50 4 23.53 1 5.88 9 19.57 5 14.71 Participant describes not being receptive for 11 13.75 1 5.88 1 5.88 9 19.57 2 5.88 months post diagnosis Participant describes being receptive to information continuously throughout their 8 10.00 0 0.00 1 5.88 7 15.22 1 2.94 experience/bit-by-bit so that it is digestible

Timing of information All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes being receptive from the beginning (diagnosis) 28 35.00 8 36.36 6 25.00 14 41.18 13 30.95 15 39.47 Participant describes being receptive to information after the shock of diagnosis 14 17.50 3 13.64 6 25.00 5 14.71 5 11.90 9 23.68 Participant describes not being receptive 11 13.75 4 18.18 5 20.83 2 5.88 6 14.29 5 13.16 for months post diagnosis Participant describes being receptive to information continuously throughout their 8 10.00 4 18.18 3 12.50 1 2.94 3 7.14 5 13.16 experience/bit-by-bit so that it is digestible

188 Lung Cancer 2018 Australian PEEK Study Section 6 Table 6.5: Information preferences (Timing) (continued) Timing of information All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes being receptive from the beginning (diagnosis) 28 35.00 20 41.67 8 25.00 13 36.11 15 34.09 Participant describes being receptive to information after the shock of diagnosis 14 17.50 8 16.67 6 18.75 6 16.67 8 18.18 Participant describes not being receptive for 11 13.75 8 16.67 3 9.38 6 16.67 5 11.36 months post diagnosis Participant describes being receptive to information continuously throughout their 8 10.00 3 6.25 5 15.63 1 2.78 7 15.91 experience/bit-by-bit so that it is digestible

Timing of information All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes being receptive from the beginning (diagnosis) 28 35.00 21 32.31 7 46.67 14 35.00 14 35.00 18 36.00 10 33.33 Participant describes being receptive to information after the shock of 14 17.50 13 20.00 1 6.67 6 15.00 8 20.00 8 16.00 6 20.00 diagnosis Participant describes not being receptive for months post diagnosis 11 13.75 9 13.85 2 13.33 3 7.50 8 20.00 8 16.00 3 10.00 Participant describes being receptive to information continuously 8 10.00 7 10.77 1 6.67 3 7.50 5 12.50 6 12.00 2 6.67 throughout their experience/bit-by-bit so that it is digestible

40.00

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00 Diagnosis After init ial shock Month(s) Continuously througout their experience/bi t-by-bit so that it is digestible

Figure 6.5: Information preferences – Timing (% of all participants)

189 Lung Cancer 2018 Australian PEEK Study Section 6 Communication with health professionals Participant describes a positive experience as health professionals have been able to take time to answer Participants were asked to describe the questions communication that they had had with health professionals throughout their experience. The most It's been really good. Any question that I had, they'd common theme was that participants described having answer them and really go into it to explain to me, to an overall positive experience (n=59; 73.75%) and 21 make sure that I understand what I'm asking, the participants (26.25%) described an overall negative information and everything. It's been really good and experience. also I have a registered nurse, a cancer nurse at the cancer centre who is available from nine to five. I can Where participants described a positive experience, ring her up any time and any questions that I have, this related to health professionals taking time to she answers them for me or goes and finds out things. answer questions (n=13; 16.25%), health professionals She's been really good. Participant 9 being caring and supportive (n=13; 16.25%) and health professionals explaining treatment options/new Oh, it's great, fantastic. I had a wonderful doctor and treatments and/or research coming through (n=9; my oncologist, she's been with me since I started this 11.25%). Where participants described a negative from beginning my diagnosis. She's very out there. experience, this related to having enough support or She doesn't hold anything back or she doesn't try skim time provided by health professionals to help patients around things. We talked things quite well with her. understand information presented (n=12; 15.00%) and She's very open to me ringing her anytime about health professionals being insensitive (n=7; 8.75%). anything. Obviously, when I was in hospital, she would come in everything or day to see me. In relation to sub-group variations, participants with Information, she's been really really great. Participant stage III lung cancer (58.82%) and those with more pain 31 (62.50%) reported having an overall positive communication experience, less frequently than the I've really only seen the doctors and I'd have said I've general population (73.75%), while those with brain just found them marvellous. They're so easy to talk to. metastases (86.36%) described this more frequently. They are very happy to answer questions. They've Participants with stage III lung cancer (5.88%) rung my daughter because she's been helping me and described health professionals taking time to answer been involved et cetera. They don't mind being questions, less frequently than the general population questioned. Again she was the one that wrote this (16.25%). Participants with stage I and II lung cancer new medication that I've started. She added that she (5.88%) described health professionals being caring was the one who joined me up to a support group on and supportive, less frequently than the general Facebook and Twitter which I've never been on before population (16.25%), while those with other either and that's been helpful too. She got some metastases (29.17%), described this more frequently information there. She's also done a lot of researching (29.17%). Participants with stage III cancer (41.18%) herself as well and I'm more than happy to talk to her. and those with more pain (37.50%) described an Participant 79 overall negative communication experience, more frequently than the general population (26.25%), while Participant describes a positive experience as health those with brain metastases (13.64%) described this professionals have been caring and supportive less frequently. Participants with stage III cancer (23.53%) and those from regional or remote areas I don't think there's many oncologist like him. Just so (26.67%) described health professionals being understanding, so willing to give every time, so keen insensitive, more frequently than the general to see the best possible outcome for his patients. population (8.75%). Participants with more pain Realistic, but hopefully realistic. Not, "Oh gee. This is (31.25%) described not having enough support or time a terrible situation." We've done that, with NAME as provided by health professionals to them understand well. NAME is equally willing to do the best for his the information presented, more frequently than the patients. Be optimistic but be realistic as well…Now general population (15.00%). it's been, I've been very lucky, I've had very positive experiences with my main medical team since I was diagnosed. Participant 19

Exceptionally good. I couldn't criticize them at all. They've been on the ball. I mean you can't please everybody. There'll be someone whose going to gripe 190 Lung Cancer 2018 Australian PEEK Study Section 6 and say it's no good, but from what I've seen and what I've heard, they've been really kind, understanding, He is great, he spent an hour explaining everything, very caring. Participant 25 and he still does. I'm happy to go back to the clinic because he does…He is pretty much…he seems to be That was just amazing. When you went there up to on top of what's coming out, and what's happening as the ward they would make you feel really welcome well, so which really helps. Participant 58 and they would ask you for coffee and they'd ask you if you were okay, if you want to see a doctor or you Participant describes a negative experience due to not want to talk to someone about some stuff. That was having enough support or time provided by health just amazing. I'm just really amazed about the cancer professionals to help patients understand ward and how they look after you. When they need to information presented come and pick you up they would open the doors so that you get in. When you get out they opened the Then afterwards, when I wanted to discuss my door. These were the drivers that would catch up and options, I felt as though they felt I was an anxious then you would go into and wait for them to come and person because I wanted to speak to the oncologist he would take you up there. It was just amazing. and even the oncologist said, "Okay, you're just When you did your treatment they would come and anxious asking me questions," rather than providing get you and they'd be all around. It was just amazing. me with information that is credible. Yes, the That's what I think hospitals should be about. They specialists have been a little bit dismissive. Participant can never not walk up because I was doing the chemo 4 and the radiation I wasn't allowed to walk anywhere. Even with the chemo they looked after you, they put I won't say it's great because like no one…they explain you down on the bed, they treated you well, they said it to you but from a patient's point of view, unless you our problem is your problem, we're here to help. I got a medical background its hard to understand think the nursing staff and stuff like that. They're what they tell you. They don't come and tell you once brilliant and they're caring. Participant 70 and then tell you again, they just tell you once and then you go away. You have to do your own research Participant describes a positive experience due to and stuff like that to actually get a better health professionals explaining treatment understanding of the cancer and what type of cancer options/new treatments and/or research coming you have. Yes. I think…That's the part that I think its…I through guess I struggled with is and probably I don't know how whether its up to the patient or whether Fantastic. I don't know how it could have been any someone should actually try and educate because a better, to be honest. Any questions I've had have been lot of the information is overwhelming and unless you answered. I was given a lot of information initially realise that "I need to go out there and find out all I anyway as I say about all the generic stuff and then it can about this and what proper treatment." because was left to me. All the health professionals I've dealt sometimes the doctors will say, "We think this is the with have always been very open, "By all means, if best" but you don't know you just accept their you want to go and get other opinions or talk to decision. Participant 35 somebody else" Or like when I went over to LOCATION, my surgeon and oncologist here were very Really not very good. The oncologist himself…he's supportive and said, "That's fine. Anything that we probably a very knowledgeable general oncologist, so can do to help you in that process, we'll send over your I got nothing against him professionally. As a person medical records or whatever it might be." Everything who can talk to somebody, and answer questions in a I got the feeling was focused on me and what made way that doesn't give you the impression that you're me feel better and gave me the best options, the most wasting his time, he gets a big fail. Participant 60 informative- options. Yes, it's been really, really good. Participant 2 Participant describes a negative experience when health professionals have been insensitive (disclosing She was interested in me, she was interested in how difficult information in an insensitive way) my family was doing. She explained everything. She was proactive and she immediately got me onto the I haven't had a wonderful experience trial. She immediately, without me even having to personally…through the general engagement with my ask, organized for the biopsies to be tested. It really oncologists. ”NAME, you're doing well, prepare for was a day and night difference, you couldn’t get two when you're not." Concepts, things like that. It's not more different oncologists. Participant 25 overall because now we're dealing with a shitty 191 Lung Cancer 2018 Australian PEEK Study Section 6 disease. I just expected a little bit more of an The fellow that did the pleurodesis, he was…not a empathetic style with patients and I don't seem to be cold character but he didn't show much emotion, and getting a hell of a lot of that. It's more of matter of yet the specialist at the, only told me a few times and fact and it's more like, "It will happen, don't expect rang up and gave me my diagnosis. He had a warm otherwise," that stuff and it's just…life's hard as it is. personality, so of course you tend to like them more. Participant 29 My oncologist is very nice, but we're not on the same wavelength in a way. It just depends on the personality of the doctor. Participant 56

Table 6.6: Health professional communication Health professional communication All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes an overall positive experience in relation to communication 59 73.75 13 76.47 10 58.82 36 78.26 23 67.65 Participant describes a positive experience as health professionals have been able to take time 13 16.25 4 23.53 1 5.88 8 17.39 5 14.71 to answer questions Participant describes a positive experience as health professionals have been caring and 13 16.25 1 5.88 3 17.65 9 19.57 4 11.76 supportive Participant describes a positive experience due to health professionals explaining treatment options/new treatments and/or research coming 9 11.25 1 5.88 1 5.88 7 15.22 2 5.88 through Participant describes a positive experience and being satisfied with communication as they have 7 8.75 2 11.76 2 11.76 3 6.52 4 11.76 been able to access health professionals when they needed to ask questions Participant describes an overall negative experience in relation to communication 21 26.25 4 23.53 7 41.18 10 21.74 11 32.35 Participant describes a negative experience due to not having enough support or time provided by health professionals to help patients understand 12 15.00 4 23.53 3 17.65 5 10.87 7 20.59 information presented Participant describes a negative experience when health professionals have been insensitive 7 8.75 0 0.00 4 23.53 3 6.52 4 11.76 (disclosing difficult information in an insensitive way) Participant describes a negative experience as participant felt as though they had to find 5 6.25 1 5.88 1 5.88 3 6.52 2 5.88 information themselves

192 Lung Cancer 2018 Australian PEEK Study Section 6 Table 6.6: Health professional communication (continued) Health professional communication All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes an overall positive experience in relation to communication 59 73.75 19 86.36 17 70.83 23 67.65 32 76.19 27 71.05 Participant describes a positive experience as health professionals have been able to 13 16.25 5 22.73 3 12.50 5 14.71 7 16.67 6 15.79 take time to answer questions Participant describes a positive experience as health professionals have been caring 13 16.25 2 9.09 7 29.17 4 11.76 4 9.52 9 23.68 and supportive Participant describes a positive experience due to health professionals explaining treatment options/new treatments and/or 9 11.25 4 18.18 3 12.50 2 5.88 4 9.52 5 13.16 research coming through Participant describes a positive experience and being satisfied with communication as they have been able to access health 7 8.75 2 9.09 1 4.17 4 11.76 2 4.76 5 13.16 professionals when they needed to ask questions Participant describes an overall negative experience in relation to communication 21 26.25 3 13.64 7 29.17 11 32.35 10 23.81 11 28.95 Participant describes a negative experience due to not having enough support or time 12 15.00 2 9.09 3 12.50 7 20.59 8 19.05 4 10.53 provided by health professionals to help patients understand information presented Participant describes a negative experience when health professionals have been insensitive (disclosing difficult information 7 8.75 1 4.55 2 8.33 4 11.76 6 14.29 1 2.63 in an insensitive way) Participant describes a negative experience as participant felt as though they had to 5 6.25 1 4.55 2 8.33 2 5.88 1 2.38 4 10.53 find information themselves.

Health professional communication All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes an overall positive experience in relation to communication 59 73.75 39 81.25 20 62.50 28 77.78 31 70.45 Participant describes a positive experience as health professionals have been able to take time 13 16.25 8 16.67 5 15.63 7 19.44 6 13.64 to answer questions Participant describes a positive experience as health professionals have been caring and 13 16.25 9 18.75 4 12.50 7 19.44 6 13.64 supportive Participant describes a positive experience due to health professionals explaining treatment options/new treatments and/or research coming 9 11.25 5 10.42 4 12.50 3 8.33 6 13.64 through Participant describes a positive experience and being satisfied with communication as they have 7 8.75 5 10.42 2 6.25 3 8.33 4 9.09 been able to access health professionals when they needed to ask questions Participant describes an overall negative experience in relation to communication 21 26.25 9 18.75 12 37.50 8 22.22 13 29.55 Participant describes a negative experience due to not having enough support or time provided by health professionals to help patients understand 12 15.00 2 4.17 10 31.25 3 8.33 9 20.45 information presented Participant describes a negative experience when health professionals have been insensitive 7 8.75 5 10.42 2 6.25 3 8.33 4 9.09 (disclosing difficult information in an insensitive way) Participant describes a negative experience as participant felt as though they had to find 5 6.25 2 4.17 3 9.38 3 8.33 2 4.55 information themselves

193 Lung Cancer 2018 Australian PEEK Study Section 6 Table 6.6: Health professional communication (continued) Health professional communication All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes an overall positive experience in relation to 59 73.75 48 73.85 11 73.33 28 70.00 31 77.50 36 72.00 23 76.67 communication Participant describes a positive experience as health professionals 13 16.25 10 15.38 3 20.00 7 17.50 6 15.00 9 18.00 4 13.33 have been able to take time to answer questions Participant describes a positive experience as health professionals 13 16.25 9 13.85 4 26.67 6 15.00 7 17.50 5 10.00 8 26.67 have been caring and supportive Participant describes a positive experience due to health professionals explaining treatment options/new 9 11.25 7 10.77 2 13.33 3 7.50 6 15.00 6 12.00 3 10.00 treatments and/or research coming through Participant describes a positive experience and being satisfied with communication as they have been able 7 8.75 5 7.69 2 13.33 3 7.50 4 10.00 3 6.00 4 13.33 to access health professionals when they needed to ask questions Participant describes an overall negative experience in relation to 21 26.25 17 26.15 4 26.67 12 30.00 9 22.50 14 28.00 7 23.33 communication Participant describes a negative experience due to not having enough support or time provided by health 12 15.00 10 15.38 2 13.33 7 17.50 5 12.50 7 14.00 5 16.67 professionals to help patients understand information presented Participant describes a negative experience when health professionals have been insensitive (disclosing 7 8.75 3 4.62 4 26.67 3 7.50 4 10.00 5 10.00 2 6.67 difficult information in an insensitive way) Participant describes a negative experience as participant felt as 5 6.25 4 6.15 1 6.67 3 7.50 2 5.00 3 6.00 2 6.67 though they had to find information themselves

80.00

70.00

60.00

50.00

40.00

30.00

20.00

10.00

0.00 Overall positive Positive Positive - caring Positive Positive Overall negative Negative - not Negative Negative - felt as experience - and supportiv e experience - experience - enough support or experience - though they had answer s questions communication explai ns accessi ble when time provided to insensitive to find information options/new needed help patients themselves treatments and/or understand research coming information through presented

Figure 6.6: Health professional communication (% of all participants) 194 Lung Cancer 2018 Australian PEEK Study Section 6 Knowledge and confidence indicating very good outcomes. “Partners in health: coping “( mean = 16.23, SD = 4.37), scored in the The Partners in Health questionnaire (PIH) measures an second highest quintile indicating good coping. individual’s knowledge and confidence for managing their own health. The Partners in Health comprises a Comparisons of Partners in Health have been made global score, 4 scales; knowledge, coping, recognition based on Lung cancer stage (Figures 6.7 to 6.11, Tables and treatment of symptoms, adherence to treatment 6.8 to 6.10), Distant metastases (Figures 6.12 to 6.16, and total score. A higher score denotes a better Table 6.11), Brain metastases (Figures 6.17 to 6.21, understanding and knowledge of disease. Summary Tables 6.12 to 6.13), Energy/Fatigue, (Figures 6.22 to statistics for the entire cohort are displayed alongside 6.26, Tables 6.15 to 6.16), Pain (Figures 6.27 to 6.31, the possible range of each scale in Table 6.7. Overall, Tables 6.17 to 6.18), Gender (Figures 6.32 to 6.36, the participants scored in the top quintile for “Partners Tables 6.19 to 6.20), Age (Figures 6.37 to 6.41, Table in health: knowledge” (median =28.00, IQR = 5.25), 6.21), Location (Figures 6.42 to 6.46, Tables 6.22 to “Partners in health: recognition” and “Partners in 6.23), Education (Figures 6.47 to 6.51, Tables 6.24 to health: management of symptoms” (median =21.50, 6.25), and SEIFA (Figures 6.52 to 6.56, Tables 6.26 to IQR =5.25), “Partners in health: adherence to 6.27). treatment” (median = 15.50, IQR = 2.00) and “Partners in health: total score” (median =81.50, IQR = 13.25),

Table 6.7: Summary statistics all participants Partners in Health Possible PIH Scale Mean SD Median IQR Quintile range Partners in health: knowledge 27.28 4.49 28.00 5.25 0 to 32 5 Partners in health: coping* 16.23 4.37 16.50 6.00 0 to 24 4 Partners in health: recognition and management of symptoms 20.63 3.11 21.50 5.25 0 to 24 5 Partners in health: adherence to treatment 14.70 1.72 15.50 2.00 0 to 16 5 Partners in health: total score 78.83 10.71 81.50 13.25 0 to 96 5

* Normal distribution use Mean and SD

Comparisons of PIH scales by lung cancer stage pairwise comparisons using Wilcoxon rank sum test Comparisons of PIH scales were made by lung cancer was used to identify the source of any differences stage. The lung cancer stage of disease was described identified in the Kruskal -Wallis test. When as those with early or stage I or II disease (n=17, assumptions for assumption of equal variances were 21.25%), those with invasive or stage III disease not met, a Welch one-way test was used, and when a (n=17.00, 21.25%), and those with advanced or stage significant result was indicated, it was followed by IV disease (n=46, 57.50%). pairwise t-tests with no assumption of equal variances (Table 6.10). Boxplots of each PIH scales by Lung cancer stage are displayed in Figures 6.7-2.11, summary statistics are No statistically significant differences were displayed in Table 6.8. observed between any of the groups.

Assumptions for one-way ANOVA test were not met, a Kruskal-Wallis test was used (Table 6.9). Post hoc Table 6.8: Summary statistics by lung cancer stage

195 Lung Cancer 2018 Australian PEEK Study Section 6 Table 6.8: Summary statistics by lung cancer stage

SF36 Scale Group Mean SD Median IQR

Stages I and II 26.65 5.27 28.00 8.00 Partners in health: knowledge Stage III 28.76 2.54 29.00 2.00 Stage IV 26.96 4.71 28.00 6.00 Stages I and II 15.53 4.33 16.00 7.00 Partners in health: coping Stage III 15.71 2.47 16.00 4.00 Stage IV 16.67 4.91 17.50 6.75 Stages I and II 19.82 4.30 22.00 8.00 Partners in health: recognition and management of symptoms Stage III 20.59 2.27 20.00 4.00 Stage IV 20.93 2.87 22.00 4.50 Stages I and II 14.76 1.52 15.00 2.00 Partners in health: adherence to treatment Stage III 14.00 2.03 15.00 4.00 Stage IV 14.93 1.64 16.00 1.75 Stages I and II 76.76 11.04 79.00 18.00 Partners in health: total score Stage III 79.06 7.01 79.00 7.00 Stage IV 79.50 11.76 82.00 14.00 Table 6.9: Kruskal-Wallis test PIH scales by lung cancer stage

PIH Scale X2 df p

Partners in health: knowledge 1.31 2 0.5194 Partners in health: recognition and management of symptoms 0.678 2 0.7125 Partners in health: adherence to treatment 4.32 2 0.1154 Partners in health: total score 1.22 2 0.5433

Table 6.10: Welch one-way test PIH scales by lung cancer stage

PIH scale F dF1 dF2 p

Partners in health: coping 0.64 2 38.46 0.5315

196 Lung Cancer 2018 Australian PEEK Study Section 6

Partners in health: knowledge Partners in health: coping 30 20 25 15 20 10 5 15

Stages I and II Stage III Stage IV Stages I and II Stage III Stage IV

Figure 6.7: Boxplot of PIH knowledge by lung cancer Figure 6.8: Boxplot of PIH coping by lung cancer stage stage

Partners in health: recognition and management of symptoms Partners in health: adherence to treatment 24 16 22 15 20 14 18 13 16 12 14 11 12 10

Stages I and II Stage III Stage IV Stages I and II Stage III Stage IV

Figure 6.9: Boxplot of PIH recognition and management Figure 6.10: Boxplot of PIH adherence to treatment by of symptoms by lung cancer stage lung cancer stage

Partners in health: total score 90 80

70 60 50

Stages I and II Stage III Stage IV

Figure 6.11: Boxplot of PIH total score by lung cancer stage

197 Lung Cancer 2018 Australian PEEK Study Section 6 Comparisons of PIH scales by distant metastases

Comparisons of PIH scales were made by distant Assumptions for normality and variance were not met, metastases status. Distant metastases was described a Wilcoxon rank sum test with continuity correction as those that had disease with distant metastases was used (Table 6.11). (excluding those with spread to lymph nodes only) (n=46, 57.50%) compared to those with no distant No statistically significant differences were metastases (n=34, 42.50%). observed between groups.

Table 6.11: Summary statistics Wilcoxon rank sum test with continuity correction PIH scales by distant metastases

PIH scale Distant metastases Median IQR W p

No 29.00 2.75 852.00 0.4951 Partners in health: knowledge Yes 28.00 6.00 No 16.00 4.75 663.50 0.2489 Partners in health: coping Yes 17.50 6.75 Partners in health: recognition and No 20.50 5.00 699.50 0.4185 management of symptoms Yes 22.00 4.50 No 15.00 2.00 614.00 0.0799 Partners in health: adherence to treatment Yes 16.00 1.75 No 79.00 11.00 673.00 0.2904 Partners in health: total score Yes 82.00 14.00

198 Lung Cancer 2018 Australian PEEK Study Section 6

Partners in health: knowledge Partners in health: coping 30 20 25 15 20 10 5 15

No Yes No Yes

Figure 6.12: Boxplot of PIH knowledge by distant Figure 6.13: Boxplot of PIH coping by distant metastases metastases

Partners in health: recognition and management of symptoms Partners in health: adherence to treatment 24 16 22 15 20 14 18 13 16 12 14 11 12 10

No Yes No Yes

Figure 6.14: Boxplot of PIH recognition and management Figure 6.15: Boxplot of PIH aherence to treatment by of symptoms by distant metastases distant metastases

Partners in health: total score 90 80 70 60 50

No Yes

Figure 6.16: Boxplot of PIH total score by distant metastases

199 Lung Cancer 2018 Australian PEEK Study Section 6 Comparisons of PIH scales by brain metastases A one-way ANOVA test was used with the assumptions Comparisons of PIH scales were by brain metastases for response variable residuals were normally status. Those with brain metastases (n=22, 27.50%) distributed and variances of populations were equal were compared to those with other distant metastases (Table 6.13). When the assumptions for normality of (excluding those with spread to lymph nodes only) residuals was not met, a Kruskal-Wallis test was used (n=24, 30.00 %), and those with no distant metastases (Table 6.14). (n=34, 42.50%). No statistically significant differences were Boxplots of each PIH scale by brain metastases are observed between these two groups. displayed in Figures 6.17 to 6.21 to summary statistics are displayed in Table 6.12.

Table 6.12: Summary statistics by brain metastases

PIH Scale Group Mean SD Median IQR

Brain metastases 27.18 5.34 29.00 6.75 Partners in health: knowledge Other distant metastases 26.75 4.15 27.50 6.00 No distant metastases 27.71 4.21 29.00 2.75 Brain metastases 16.23 4.52 16.00 5.75 Partners in health: coping Other distant metastases 17.08 5.31 18.00 5.75 No distant metastases 15.62 3.47 16.00 4.75 Brain metastases 20.59 3.35 22.00 5.75 Partners in health: recognition and management of symptoms Other distant metastases 21.25 2.38 21.50 3.25 No distant metastases 20.21 3.41 20.50 5.00 Brain metastases 15.14 1.42 16.00 1.00 Partners in health: adherence to treatment Other distant metastases 14.75 1.82 16.00 2.00 No distant metastases 14.38 1.81 15.00 2.00 Brain metastases 79.14 12.41 83.00 15.25 Partners in health: total score Other distant metastases 79.83 11.39 82.00 13.50 No distant metastases 77.91 9.18 79.00 11.00

Table 6.13: One-way ANOVA test PIH scales by brain metastases

Sum of Mean PIH Scale DF F p squares Square Between groups 30.20 2 15.11 0.79 0.4580 Partners in health: coping Within groups 1475.70 77 19.16 Total 1505.90 79

Table 6.14: Kruskal-Wallis test PIH scales by brain metatstases

PIH Scale X2 df p

Partners in health: knowledge 1.31 2 0.5193 Partners in health: recognition and management of symptoms 0.84 2 0.6579 Partners in health: adherence to treatment 3.34 2 0.1886 Partners in health: total score 1.14 2 0.5650

200 Lung Cancer 2018 Australian PEEK Study Section 6

Partners in health: knowledge Partners in health: coping 30 20 25 15 20 10 5 15

Brain mets Other distant mets No distant mets Brain mets Other distant mets No distant mets

Figure 6.17: Boxplot of PIH knowledge by brain Figure 6.18: Boxplot of PIH coping by brain metastases metastases

Partners in health: recognition and management of symptoms Partners in health: adherence to treatment 24 16 22 15 20 14 18 13 16 12 14 11 12 10

Brain mets Other distant mets No distant mets Brain mets Other distant mets No distant mets

Figure 6.19: Boxplot of PIH recognition and management Figure 6.20: Boxplot of PIH adherence to treatment by of symptoms by brain metastases brain metastases

Partners in health: total score 90 80 70 60 50

Brain mets Other distant mets No distant mets

Figure 6.21: Boxplot of PIH total score by brain metastases

201 Lung Cancer 2018 Australian PEEK Study Section 6

Comparisons of PIH scales by energy/fatigue energy/fatigue (Median = 22.00, IQR =4.00) compared to those with worse energy/fatigue (Median = 20.00, Comparisons of PIH scales were made by IQR = 4.00) [W=1034.00, p=0.0214]; the median score energy/fatigue status. Energy/fatigue status was for the “Partners in health: total score” was defined as those with a higher than average score for significantly higher for those with better the cohort in the SF36 energy/fatigue scale “Better energy/fatigue (Median = 84.00, IQR =13.25) energy/fatigue” (n=42, 52.50%) compared to those compared to those with worse energy/fatigue (Median with an average or less score “Worse energy/fatigue” = 77.00, IQR = 13.25) [W=1078.50, p=0.0069]. (n=38, 47.50%). Boxplots of each PIH scale by energy/fatigue are displayed in Figures 6.22-2.26. The “Partners in health: coping”, median scores for participants with better energy/fatigue were A two-sample t-test was used when assumptions for significantly higher than those with worse energy normality and variance were met (Table 6.15), or when fatigue, however all scores were in the second highest assumptions for normality and variance were not met, quintile for each group, indicating good outcomes. a Wilcoxon rank sum test with continuity correction was used (Table 6.16).

A two sample t-test indicated that the mean score for The “Partners in health: recognition and the “Partners in health: coping” scale [t(78) = 3.17, management of symptoms”, and “Partners in p=0.0022] was significantly better for those with better health: total score” median scores for participants energy/fatigue (Mean = 17.62 SD= 3.91) compared to with better energy/fatigue were significantly higher those with worse energy/fatigue (Mean = 14.68, SD = than those with worse energy fatigue, however all 4.38). scores were in the highest quintile for each scale, indicating very good recognition and management Wilcoxon rank sum tests with continuity correction of symptoms, and knowledge and confidence for indicated that the median score for the “Partners in managing their own health, for both groups. health: recognition and management of symptoms” was significantly higher for those with better

Table 6.15: Summary statistics and two sample t-test PIH scale by energy/fatigue

PIH Scale Fatigue Mean SD t dF p

Partners in health: coping Better energy/fatigue 17.62 3.91 3.17 78 0.0022* Worse energy/fatigue 14.68 4.38

*Statistically significant at p<0.05

Table 6.16: Summary statistics Wilcoxon rank sum test with continuity correction PIH scales by energy/fatigue

PIH Scale Fatigue Median IQR W p

Better energy/fatigue 29.00 2.75 932.00 0.1945 Partners in health: knowledge Worse energy/fatigue 28.00 6.00 Partners in health: recognition and Better energy/fatigue 22.00 4.00 1034.00 0.0214* management of symptoms Worse energy/fatigue 20.00 4.00 Better energy/fatigue 15.50 2.00 864.50 0.4945 Partners in health: adherence to treatment Worse energy/fatigue 15.50 2.75 Better energy/fatigue 84.00 13.25 1078.50 0.0069* Partners in health: total score Worse energy/fatigue 77.00 13.25

*Statistically significant at p<0.05

202 Lung Cancer 2018 Australian PEEK Study Section 6

Partners in health: knowledge Partners in health: coping 30 20 25 15 20 10 5 15

Better energy/fatigue Worse energy/fatigue Better energy/fatigue Other dist. metastases

Figure 6.22: Boxplot of PIH knowledge by social Figure 6.23: Boxplot of PIH coping by social functioning functioning

Partners in health: recognition and management of symptoms Partners in health: adherence to treatment 24 16 22 15 20 14 18 13 16 12 14 11 12 10

Better energy/fatigue Other dist. metastases Better energy/fatigue Other dist. metastases

Figure 6.24: Boxplot of PIH recognition and management Figure 6.25: Boxplot of PIH adherence to treatment by of symptoms by social functioning social functioning

Partners in health: total score 90 80 70 60 50

Better energy/fatigue Other dist. metastases

Figure 6.26: Boxplot of PIH total score by social functioning

203 Lung Cancer 2018 Australian PEEK Study Section 6 Comparisons of PIH scales by pain higher for those with less pain (Median = 84.00, IQR =9.50) compared to those with more pain (Median = Comparisons of PIH scales were made by pain status. 75.00, IQR = 16.25) [W=1129.50, p=0.0004]. Pain status was defined as those that scored above average for the cohort in the SF36 Pain scale “Less pain” (n=48, 60.00%) compared to those that scored The “Partners in health: coping”, median scores for average or below “More pain” (n=32, 40.00%). participants with less pain were significantly higher Boxplots of each PIH scale by pain are displayed in than those with more pain, however all scores were Figures 6.27-2.31. in the second highest quintile for each group, indicating good coping for both groups. A two-sample t-test was used when assumptions for normality and variance were met (Table 6.17), or when assumptions for normality and variance were not met, The “Partners in health: knowledge”, and a Wilcoxon rank sum test with continuity correction “Partners in health: recognition and management was used (Table 6.18). of symptoms” median scores for participants with better energy/fatigue were significantly higher than A two sample t-test indicated that the mean score for those with worse energy fatigue, however all scores the “Partners in health: coping” [t(78) = 2.38, were in the highest quintile for each scale, p=0.0199] was significantly better for those with less indicating very good knowledge, and very good pain (mean = 17.15 SD= 3.97) compared to those with recognition and management of symptoms for both more pain (Mean = 14.84, SD = 4.63). groups.

Wilcoxon rank sum tests with continuity correction The “Partners in health: total score” mean score for indicated that the median score for the “Partners in participants with less pain was in the in the highest health: knowledge” was significantly higher for those quintile indicating very good knowledge and with less pain (Median = 30.00, IQR =4.00) compared confidence for managing their own health. These to those with more pain (Median = 28.00, IQR = 5.25) scores were significantly higher compared to the [W=1060.50, p=0.0038]; the median score for the mean score for participants with more pain was in “Partners in health: recognition and management of the second lowest highest indicating good symptoms” was significantly higher for those with less knowledge and confidence for managing their own pain (Median = 22.00, IQR =4.00) compared to those health. with more pain (Median = 19.50, IQR = 6.00) [W=1140.00, p=0.0002]; the median score for the “Partners in health: total score” was significantly

Table 6.17: Summary statistics and two sample t-test PIH scale by pain

PIH Scale Pain Mean SD t dF p

Less pain 17.15 3.97 2.38 78 0.0199* Partners in health: coping More pain 14.84 4.63

*Statistically significant at p<0.05

Table 6.18: Summary statistics Wilcoxon rank sum test with continuity correction PIH scales by energy/fatigue

204 Lung Cancer 2018 Australian PEEK Study Section 6 W p PIH Scale Pain Median IQR Less pain 30.00 4.00 1060.50 0.0038* Partners in health: knowledge More pain 28.00 5.25 Partners in health: recognition and Less pain 22.00 4.00 1140.00 0.0002* management of symptoms More pain 19.50 6.00 Less pain 16.00 1.25 908.00 0.1410 Partners in health: adherence to treatment More pain 15.00 3.25 Less pain 84.00 9.50 1129.50 0.0004* Partners in health: total score More pain 75.00 16.25

*Statistically significant at p<0.05

Partners in health: knowledge Partners in health: coping 30 20 25 15 20 10 5 15

Less pain More pain Less pain More pain

Figure 6.27: Boxplot of PIH knowledge by pain Figure 6.28: Boxplot of PIH coping by pain

Partners in health: recognition and management of symptoms Partners in health: adherence to treatment 24 16 22 15 20 14 18 13 16 12 14 11 12 10

Less pain More pain Less pain More pain

Figure 6.29: Boxplot of PIH recognition and management Figure 6.30: Boxplot of PIH adherence to treatment by of symptoms by pain pain

205 Lung Cancer 2018 Australian PEEK Study Section 6

Partners in health: total score 90 80 70 60 50

Less pain More pain

Figure 6.31: Boxplot of PIH total score by pain

Comparisons of PIH scales by gender for normality and variance were not met, a Wilcoxon rank sum test with continuity correction was used Comparisons of PIH scales were made by gender, (Table 6.20). females (n=66, 82.50%) were compared with males (n=14, 17.50%). Boxplots of each PIH scale by gender No significant differences were observed between are displayed in Figures 6.32-2.36. A two-sample t-test females and males for any of the PIH scales. was used when assumptions for normality and variance were met (Table 6.19), or when assumptions

Table 6.19: Summary statistics and two sample t-test PIH scale by gender

PIH Scale Gender Mean SD t dF p

Partners in health: coping Female 16.47 4.18 1.09 78 0.2792 Male 15.07 5.18 Table 6.20: Summary statistics Wilcoxon rank sum test with continuity correction PIH scales by gender

PIH Scale Gender Median IQR W p

Partners in health: knowledge Female 28.00 5.00 492.50 0.7016 Male 28.00 5.75 Partners in health: recognition and management of symptoms Female 21.50 3.75 525.00 0.4224 Male 20.00 5.50 Partners in health: adherence to treatment Female 16.00 2.00 545.50 0.2588 Male 14.50 2.00 Partners in health: total score Female 82.00 11.75 507.00 0.5726 Male 79.00 22.75

206 Lung Cancer 2018 Australian PEEK Study Section 6

Partners in health: knowledge Partners in health: coping 30 20 25 15 20 10 5 15

Female Male Female Male

Figure 6.32: Boxplot of PIH knowledge by gender Figure 6.33: Boxplot of PIH coping by gender

Partners in health: recognition and management of symptoms Partners in health: adherence to treatment 24 16 22 15 20 14 18 13 16 12 14 11 12 10

Female Male Female Male

Figure 6.34: Boxplot of PIH recognition and management Figure 6.35: Boxplot of PIH adherence to treatment by of symptoms by gender gender

Partners in health: total score 90 80

70 60 50

Female Male

Figure 6.36: Boxplot of PIH total score by gender

207 Lung Cancer 2018 Australian PEEK Study Section 6 Comparisons of PIH scales by age sum test with continuity correction was used (Table 6.21). Comparisons of PIH scales were made by age, those that were 55 and older (n=36, 45.00%) were compared No significant differences were observed between with those that were aged between 18 and 54 (n=44, older and younger participants for any of the PIH 55.00%). Boxplots of each PIH scale by age are scales. displayed in Figures 6.37-2.41. Assumptions for normality and variance were not met, a Wilcoxon rank

Table 6.21: Summary statistics Wilcoxon rank sum test with continuity correction PIH scales by emotional well-being

PIH Scale Group Median IQR W p

Older 29.00 5.25 887.00 0.3567 Partners in health: knowledge Younger 28.00 6.00 Older 16.00 7.50 726.50 0.5279 Partners in health: coping Younger 17.00 4.00 Partners in health: recognition and Older 22.00 4.00 919.00 0.2149 management of symptoms Younger 20.00 5.00 Older 16.00 2.00 816.50 0.8031 Partners in health: adherence to treatment Younger 15.00 2.00 Older 82.00 16.75 861.00 0.5071 Partners in health: total score Younger 81.00 11.00

208 Lung Cancer 2018 Australian PEEK Study Section 6

Partners in health: knowledge Partners in health: coping 30 20 25 15 20 10 5 15

Older Younger Older Younger

Figure 6.37: Boxplot of PIH knowledge by age Figure 6.38: Boxplot of PIH coping by age

Partners in health: recognition and management of symptoms Partners in health: adherence to treatment 24 16 22 15 20 14 18 13 16 12 14 11 12 10

Older Younger Older Younger

Figure 6.39: Boxplot of PIH recognition and management Figure 6.40: Boxplot of PIH adherence to treatment by age of symptoms by age

Partners in health: total score 90 80 70 60 50

Older Younger

Figure 6.41: Boxplot of PIH total score by age

209 Lung Cancer 2018 Australian PEEK Study Section 6 Comparisons of PIH scales by location assumptions for normality and variance were met (Table 6.22), or when assumptions for normality and Comparisons of PIH scales were made by location. The variance were not met, a Wilcoxon rank sum test with location of participants was evaluated by postcode continuity correction was used (Table 6.23). using the Australian Statistical Geography Maps (ASGS) Remoteness areas accessed from DoctorConnect No significant differences were observed between (doctorconnect.gov.au), those living in a metropolitan participants that lived in metropolitan areas area (n=65, 81.25%) were compared to those living in compared with participants that loved in regional or regional or remote areas (n= 15, 18.75%). Boxplots of remote areas for any of the PIH scales. each PIH scale by location are displayed in Figures 6.42 to 6.46. A two-sample t-test was used when

Table 6.22: Summary statistics and two sample t-test PIH scale by social functioning

PIH Scale Location Mean SD t dF p

Metropolitan 16.11 4.39 -0.50 78 0.6200 Partners in health: coping Regional or remote 16.73 4.38

Table 6.23: Summary statistics Wilcoxon rank sum test with continuity correction PIH scales by emotional well-being

PIH Scale Location Median IQR W p

Metropolitan 28.00 5.00 442.00 0.5759 Partners in health: knowledge Regional or remote 29.00 7.00 Partners in health: recognition and Metropolitan 21.00 5.00 468.00 0.8123 management of symptoms Regional or remote 22.00 4.50 Metropolitan 15.00 2.00 494.50 0.9314 Partners in health: adherence to treatment Regional or remote 16.00 3.00 Metropolitan 81.00 11.00 433.50 0.5091 Partners in health: total score Regional or remote 85.00 18.50

210 Lung Cancer 2018 Australian PEEK Study Section 6

Partners in health: knowledge Partners in health: coping 30 20 25 15 20 10 5 15

Metropolitan Regional or remote Metropolitan Regional or remote

Figure 6.42: Boxplot of PIH knowledge by location Figure 6.43: Boxplot of PIH coping by location

Partners in health: recognition and management of symptoms Partners in health: adherence to treatment 24 16 22 15 20 14 18 13 16 12 14 11 12 10

Metropolitan Regional or remote Metropolitan Regional or remote

Figure 6.44: Boxplot of PIH recognition and management Figure 6.45: Boxplot of PIH adherence to treatment by of symptoms by location location

Partners in health: total score 90 80 70 60 50

Metropolitan Regional or remote

Figure 6.46: Boxplot of PIH total score by location

211 Lung Cancer 2018 Australian PEEK Study Section 6 Comparisons of PIH scales by education status when assumptions for normality and variance were not met, a Wilcoxon rank sum test with continuity Comparisons of PIH scales were made by education. correction was used (Table 6.25). Education status, was defined as those with university degree (n= 40, 50.00%) and those with trade or high No significant differences were observed between school qualifications (n=40, 50.00%). Boxplots of each groups for any PIH scale. PIH scale by education are displayed in Figures 6.24- 6.25. A two-sample t-test was used when assumptions for normality and variance were met (Table 6.24), or

Table 6.24: Summary statistics and two sample t-test PIH scale by education

PIH Scale Group Mean SD t dF p

Trade or high school 15.58 4.61 -1.34 78 0. 1847 Partners in health: coping University 16.88 4.06

Table 6.25: Summary statistics Wilcoxon rank sum test with continuity correction PIH scales by education

PIH Scale Group Median IQR W p

Trade or high school 28.00 5.00 767.50 0.7561 Partners in health: knowledge University 28.50 7.00 Partners in health: recognition and Trade or high school 21.00 4.25 701.50 0.3391 management of symptoms University 22.00 5.25 Trade or high school 15.00 2.50 697.50 0.2917 Partners in health: adherence to treatment University 16.00 2.00 Trade or high school 79.50 12.50 668.00 0.2052 Partners in health: total score University 82.50 13.00

212 Lung Cancer 2018 Australian PEEK Study Section 6

Partners in health: knowledge Partners in health: coping 30 20 25 15 20 10 5 15

Trade or high school University Trade or high school University

Figure 6.47: Boxplot of PIH knowledge by education Figure 6.48: Boxplot of PIH coping by education

Partners in health: recognition and management of symptoms Partners in health: adherence to treatment 24 16 22 15 20 14 18 13 16 12 14 11 12 10

Trade or high school University Trade or high school University

Figure 6.49: Boxplot of PIH recognition and management Figure 6.50: Boxplot of PIH adherence to treatment by of symptoms by education education

Partners in health: total score 90 80

70 60 50

Trade or high school University

Figure 6.51: Boxplot of PIH total score by education

213 Lung Cancer 2018 Australian PEEK Study Section 6 Comparisons of PIH scales by Socio-Economic Indexes Boxplots of each PIH scale by SEIFA are displayed in For Areas (SEIFA) Figures 6.52-6.56. A two-sample t-test was used when assumptions for normality and variance were met Comparisons of PIH scales were made by Socio- (Table 6.26), or when assumptions for normality and economic Indexes for Areas (SEIFA), SEIFA scores range variance were not met, a Wilcoxon rank sum test with from 1 to 10, a higher score denotes a higher level of continuity correction was used (Table 6.27). advantage. Those with a higher SEIFA score of 7-10 (n=50, 62.50%) compared to those with a mid to low No significant differences were observed between SEIFA score of 1-6 (n=30, 37.50%). groups for any PIH scale.

Table 6.26: Summary statistics and two sample t-test PIH scale by SEIFA

PIH Scale Group Mean SD t dF p

High SEIFA 16.08 4.42 -0.38 78 0.7039 Partners in health: coping Mid - Low SEIFA 16.47 4.34

Table 6.27: Summary statistics Wilcoxon rank sum test with continuity correction PIH scales by SEIFA

PIH Scale Group Median IQR W p

High SEIFA 29.00 4.75 768.50 0.8568 Partners in health: knowledge Mid - Low SEIFA 28.00 6.50 Partners in health: recognition and High SEIFA 22.00 4.00 898.00 0.1373 management of symptoms Mid - Low SEIFA 20.50 5.50 High SEIFA 15.00 2.00 745.50 0.9659 Partners in health: adherence to treatment Mid - Low SEIFA 16.00 2.00 High SEIFA 80.00 11.75 Partners in health: total score Mid - Low SEIFA 82.00 17.75 775.00 0.8074

214 Lung Cancer 2018 Australian PEEK Study Section 6

Partners in health: knowledge Partners in health: coping 30 20 25 15 20 10 5 15

High SEIFA Mid – Low SEIFA High SEIFA Mid – Low SEIFA

Figure 6.52: Boxplot of PIH knowledge by SEIFA Figure 6.53: Boxplot of PIH coping by SEIFA

Partners in health: recognition and management of symptoms Partners in health: adherence to treatment 24 16 22 15 20 14 18 13 16 12 14 11 12 10

High SEIFA Mid – Low SEIFA High SEIFA Mid – low SEIFA

Figure 6.54: Boxplot of PIH recognition and management Figure 6.55: Boxplot of PIH adherence to treatment by of symptoms by SEIFA SEIFA

Partners in health: total score 90 80

70 60 50

High SEIFA Mid – Low SEIFA

Figure 6.56: Boxplot of PIH total score by SEIFA

215 Lung Cancer 2018 Australian PEEK Study Section 6 Information given by healthcare professionals and education received more information about treatment searched for independently. options ((n=35, 87.50%) compared to those that had trade or high school education (n=27, 67.50%). Those Participants were asked about what type of that lived in an area with a lower SEIFA received more information they were given by healthcare information about diet (N=18, 60.00% compared to professionals and what type of information they N=16, 32.00% for those that lived in a area with a searched for independently. Information about higher SEIFA), and more information about physical treatment options (N=62, 77.50%), activity (N=16, 53.33% compared to N=16, 32.00% for psychological/social support (N=41, 51.25%), and those that lived in a area with a higher SEIFA) disease management (N=38, 47.50%) were most frequently given to participants by healthcare Participants were asked about what type of professionals, and information about complimentary information they searched for after receiving therapies (N=9, 11.25%), and interpreting test results information from healthcare professionals. (N=14, 17.50%) were give least often (Figure 6.57). Information about complementary therapies (58.75%) Two participants (2.50%) indicated that they received was most often searched for, followed by disease very little information from health professionals about management (56.25%) and treatment options lung cancer. (53.75%). The least searched for topic was hereditary considerations genes or genomic biomarker Within sub-groups, the types of information given information (22.50%). differed, the most notable differences were observed are described. Those with distant metastases were Younger participants searched more often for given more information about treatment options information about complimentary therapies (N=31, (N=42, 91.30%) compared to those without distant 70.45% compared to older participants N=16, 70.45%). metastases (N=20, 58.82%); those without distant Those with worse energy/fatigue searched for metastases received more information about diet information about psychological/social support (N=21, (N=19, 55.88%) compared to those with distant 55.26%) compared with those with better metastases (N=15, 32.61%). Those with university energy/fatigue (N=11, 26.19%).

Hereditary considerations genes or… Hereditary considerations genes or… Psychological/social support Psychological/social support

Physical activity Physical activity Dietary information Dietary information How to interpret test results How to interpret test results Clinical Trials Clinical Trials Complementary therapies Complementary therapies

Disease management Disease management Tr eatm ent options Tr eatm ent options Disease cause Disease cause 0.00 10.0020.0030.0040.0050.0060.0070.0080.0090.00 0.00 10.00 20.00 30.00 40.00 50.00 60.00 70.00 Figure 6.57: Information given by healthcare Figure 6.58: Information searched for independently: all professionals: all participants participants

Hereditary considerations genes or… Hereditary considerations genes or… Psychological/social support Psychological/social support Physical activity Physical activity Dietary information Dietary information How to interpret test results How to interpret test results Clinical Trials Clinical Trials Complementary therapies Complementary therapies Disease management Disease management Tr eatm ent options Tr eatm ent options Disease cause Disease cause 0.00 10.0020.0030.0040.0050.0060.0070.0080.0090.00 0.00 20.00 40.00 60.00 80.00 100.00 Advanced Intermediate Early Advanced Intermediate Early Figure 6.59: Information given by healthcare professionals Figure 6.60: Information searched for independently by by lung cancer stage lung cancer stage 216 Lung Cancer 2018 Australian PEEK Study Section 6

0.00 20.00 40.00 60.00 80.00 100.00 0.00 10.00 20.00 30.00 40.00 50.00 60.00 70.00

Metastases No metastases Metastases No metastases

Figure 6.61: Information given by healthcare Figure 6.62: Information searched for independently by professionals by distant metastases distant metastases

0.00 20.00 40.00 60.00 80.00 100.00 120.00 0.00 10.00 20.00 30.00 40.00 50.00 60.00 70.00

No metastases Other metastases Brain metastases No metastases Other metastases Brain metastases Figure 6.63: Information given by healthcare Figure 6.64: Information searched for independently by professionals by brain metastases brain metastases

0.00 10.0020.0030.0040.0050.0060.0070.0080.0090.00 0.00 10.00 20.00 30.00 40.00 50.00 60.00 70.00

Worse fatigue Better fatigue Worse fatigue Better fatigue Figure 6.65: Information given by healthcare Figure 6.66: Information searched for independently by professionals by energy/fatigue energy/fatigue

0.00 10.0020.0030.0040.0050.0060.0070.0080.0090.00 0.00 10.00 20.00 30.00 40.00 50.00 60.00 70.00

Worse pain Better pain Worse pain Better pain Figure 6.67: Information given by healthcare Figure 6.68: Information searched for independently by professionals by pain pain

217 Lung Cancer 2018 Australian PEEK Study Section 6

0.00 20.00 40.00 60.00 80.00 100.00 0.00 10.00 20.00 30.00 40.00 50.00 60.00 70.00 Male Female Male Female Figure 6.69: Information given by healthcare Figure 6.70: Information searched for independently by professionals by gender gender

Hereditary considerations genes or… Hereditary considerations genes or… Psychological/social support Psychological/social support Physical activity Physical activity Dietary information Dietary information How to interpret test results How to interpret test results Clinical Trials Clinical Trials Complementary therapies Complementary therapies Disease management Disease management Tr eatm ent options Tr eatm ent options Disease cause Disease cause 0.00 10.0020.0030.0040.0050.0060.0070.0080.0090.00 0.00 10.00 20.00 30.00 40.00 50.00 60.00 70.00 80.00 Younger Older Younger Older Figure 6.71: Information given by healthcare Figure 6.72: Information searched for independently by professionals by age age

0.00 10.0020.0030.0040.0050.0060.0070.0080.0090.00 0.00 10.00 20.00 30.00 40.00 50.00 60.00 70.00 Regional Metropolitan Regional Metropolitan Figure 6.73: Information given by healthcare Figure 6.74: Information searched for independently by professionals by location location

0.00 20.00 40.00 60.00 80.00 100.00 0.00 10.00 20.00 30.00 40.00 50.00 60.00 70.00 University School/Trade University School/Trade Figure 6.75: Information given by healthcare Figure 6.76: Information searched for independently by professionals by education education

218 Lung Cancer 2018 Australian PEEK Study Section 6

0.00 10.0020.0030.0040.0050.0060.0070.0080.0090.00 0.00 10.00 20.00 30.00 40.00 50.00 60.00 70.00

Lower SEIFA Higher SEIFA Lower SEIFA Higher SEIFA Figure 6.77: Information given by healthcare Figure 6.78: Information searched for independently by professionals by SEIFA SEIFA

Information gaps from healthcare professionals or independently for The largest gaps in information, where information was treatment options (N=93, 78.00%) and disease neither given to patients nor searched for management (N=67, 91.25%). Complementary independently were how to interpret test results therapies (N= 41, 51.25%) was the topic that was most (n=35, 43.75%), and hereditary considerations genes or searched for independently following no information genomic biomarker information (n=48, 60.00%) (Figure from health professionals.. 6.79). Participants were given most information either

Hereditary/genes/genomic biomarker Psychological/social support Physical activity Dietary information Interpret test results Clinical Trials Complementary therapies Disease management Tr eatm ent options Disease cause

0% 20% 40% 60% 80% 100%

Information given, NOT searched Information given AND searched Information NOT given, BUT searched Information NOT given, Not searched

Figure 6.79: Proportion of information given by health care professionals and searched for independently.

219 Lung Cancer 2018 Australian PEEK Study Section 6

Most trusted information sources information to the participant. Across all participants, information from the participants’ hospital or clinic Participants were asked to rank which information was most trusted followed by information from non- source that they most trusted, where 1 is the most profit or charitable organisations. Information from trusted and 4 is the least trusted. A weighted average pharmaceutical companies was least trusted. (Figure is presented in Figure 6.80. With a weighted ranking, 6.73). the higher the score, the more trusted the source of

3.50 3.21 2.91 3.00

2.50 2.18

2.00 1.70

1.50

1.00 Weighted average Weighted

0.50

0.00

Non-profit, charity Government Pharmaceutical Hospital or clinic or patient companies organisations Figure 6.80: Most trusted information sources

220 Lung Cancer 2018 Australian PEEK Study Section 7 Section 7 Care and support

Lung Cancer 2018 Australian PEEK Study Section 7

Section 7: Experience of care and support Care coordination The Care Coordination questionnaire comprises a total score, 2 scales (communication and navigation), and a single question for each relating to care-coordination and care received. A higher score denotes better care outcome. • Overall the entire cohort had a median score of 8.0 for both “Care coordination: care coordination global score” (IQR = 4.00), and “Care coordination: quality of care global measure” (IQR = 2.00), which is in the second highest quintile, indicating good global measures for care coordination and quality of care. • The mean score for “Care coordination: navigation” (Mean = 26.20, SD=4.46) was in the second highest quintile, indicating navigation of care. • The scores for “Care coordination: communication” (Mean = 39.50, SD = 8.97), and (“Care coordination: total score (Mean = 65.70, SD = 11.80) were in the middle of the scale, indicating moderate communication, and moderate over all care coordination. Care coordination – lung cancer stage • The lung cancer stage of disease was described as those with early or stages I or II disease (N=17, 21.25%), those with invasive or stage III disease (N=17.00, 21.25%), and those with advanced or stage IV disease (N=46, 57.50%). • Participants with stage IV lung cancer had median score for the “Care coordination: quality of care global measure” scale that was in the highest quintile, indicating very good global quality of care. The median score was significantly higher than those with stage III lung cancer, where the median score was in the second highest quintile, indicating good global quality of care. Care coordination – by distant metastases • Distant metastases was described as those that had disease with distant metastases (excluding those with spread to lymph nodes only) (N=46, 57.50%) compared to those no distant metastases (N=34, 42.50%). • Participants with distant metastases had a median score for the “Care coordination: quality of care global measure” scale that was in the highest quintile, indicating very good global quality of care. The median score was significantly higher than those with no distant metastases, where the median score was in the second highest quintile, indicating good global quality of care. Care coordination – by brain metastases • Brain metastases was described as those with brain metastases (N=22, 27.50%) were compared to those with other distant metastases (excluding those with spread to lymph nodes only) (N=24, 30.00 %), and those with no distant metastases (N=34, 42.50%). • There were no statistically significant differences observed in any care coordination scales between those with brain metastases, other distant metastases, and no metastases. Care coordination– by energy/fatigue • Energy/fatigue was described as those with a higher than average score for the cohort in the SF36 energy/fatigue scale, better energy/fatigue (N=42, 52.50%) compared to those with an average or less score, worse energy/fatigue (N=38, 47.50%) • There were no statistically significant differences observed in any care coordination scales by energy/fatigue status. Care coordination – by pain • Pain was described as those that scored above average for the cohort in the SF36 Pain scale, less pain (N=48, 60.00%) compared to those that scored average or below, more pain (N=32, 40.00%). • The “Care coordination: Communication” mean score for participants with less pain was significantly higher than the median score for those with more pain. However, both of these scores were in the middle of the scale indicating moderate communication for both groups. • The “Care coordination: total score” mean score for participants with less pain was in the second highest quintile indicating good overall care coordination. This score was significantly higher compared to

222 Lung Cancer 2018 Australian PEEK Study Section 7 participants with more pain with a median score in the middle of the scale, indicating moderate overall care coordination. • The “Care coordination: quality of care global measure” median score for participants with less pain was in the highest quintile indicating very good global quality of care. This score was significantly higher compared to participants with more pain with a median score in the second highest quintile, indicating good global quality of care. • The “Care coordination: Navigation” median score for participants with less pain was significantly higher than the median score for those with more pain. However, both of these scores were in the second highest quintile indicating good navigation. Care coordination – by gender • The gender of participants, females (N=66, 82.50%) were compared with males (N=14, 17.50%). • There were no statistically significant differences observed in any care coordination scales between males and females. Care coordination – by age • The age of the participants, those that were 55 and older, older (55 and older) (N=36, 45.00%) were compared with those that were aged between 18 and 54, younger (18 to 54) (N=44, 55.00%). • There were no statistically significant differences observed in any care coordination scales between older and younger participants. Care coordination – by location • The location of participants was evaluated by postcode using the Australian Statistical Geography Maps (ASGS) Remoteness areas, those living in a metropolitan area, metropolitan (N=65, 81.25%) were compared to those living in regional/rural areas, regional or remote (N=15, 18.75%). • There were no statistically significant differences observed in any care coordination scales between participants that live in metropolitan areas and those that live in regional or remote areas. Care coordination – by education • Education status, between those with a university degree, university (N= 40, 50.00%), and those with trade or high school qualifications, trade or high school (N=40, 50.00%) • There were no statistically significant differences observed in any care coordination scales between participants with university qualifications and those with trade or high school qualifications. Care coordination – by SEIFA • Socio-economic Indexes for Areas (SEIFA) scores range from 1 to 10, a higher score denotes a higher level of advantage. Those with a higher SEIFA score of 7-10 , high SEIFA (N=50, 62.50%) compared to those with a mid to low SEIFA score of 1-6, mid-low SEIFA (N=30, 37.50%). • There were no statistically significant differences observed in any care coordination scales between participants that live in areas with higher SEIFA scores and those that live in areas with lower SEIFA scores. Care and support received This question aims to investigate what services patients consider to be support and care services. The most common description of care and support was from family and friends (n=61; 76.25%). This was followed by receiving support through charities (n=29; 36.25%), support through clinical trials (n=20; 25.00%), support groups (n=16; 20.00%) and support through online portals including Facebook (n=10; 12.50%).

223 Lung Cancer 2018 Australian PEEK Study Section 7 Experience of coordination of care highest quintile, indicating good navigation of care. The scores for “Care coordination: communication” A Care Coordination questionnaire was completed by (Mean = 39.50, SD = 8.97), and (“Care coordination: participants on the online questionnaire. The Care total score (Mean = 65.70, SD = 11.80) were in the Coordination questionnaire comprises a total score, 2 middle of the scale, indicating moderate scores. scales (communication and navigation), and a single question for each relating to care-coordination and Comparisons of care coordination have been made care received. A higher score denotes better care based on Lung cancer stage (Figures 7.1 to 7.5, Tables outcome. Summary statistics for the entire cohort are 7.2 to 7.5), Distant metastases (Figures 7.6 to 7.10, displayed alongside the possible range of each scale in Tables 7.6 to 7.7), Brain metastases (Figures 7.11 to Table 7.1. Overall the entire cohort had a median score 7.15, Tables 7.8 to 7.10), Energy/Fatigue, (Figures 7.16 of 8.0 for both “Care coordination: care coordination to 7.20, Tables 7.11 to 7.12), Pain (Figures 7.21 to 7.25, global score” (IQR = 4.00), and “Care coordination: Tables 7.13 to 7.14), Gender (Figures 7.26 to 7.30, quality of care global measure” (IQR = 2.00), which is Tables 7.15 to 7.16), Age (Figures 7.31 to 7.35, Tables in the second highest quintile, indicating good care 7.17 to 7.18), Location (Figures 7.36 to 7.40, Tables received. The mean score for “Care coordination: 7.19 to 7.20), Education (Figures 7.41 to 7.45, Table navigation” (Mean = 26.20, SD=4.46) was in the second 7.21), and SEIFA (Figures 7.46 to 7.50, Tables 7.22 to 7.23).

Table 7.1: Summary statistics Care coordination scale Possibe Care coordination scale Mean SD Median IQR Quintile range Care coordination: communication* 39.50 8.97 41.00 12.00 13 to 65 3 Care coordination: navigation* 26.20 4.46 26.00 6.00 7 to 35 4 Care coordination: total score* 65.70 11.80 66.50 20.00 20 to 100 3 Care coordination: care coordination global measure 7.18 2.07 8.00 4.00 1 to 10 4 Care coordination: quality of care global measure 7.98 1.77 8.00 2.00 1 to 10 4

*Normal distribution, use Mean and SD as central measure

Comparisons of Care Coordination scores by lung cancer stage A Kruskal-Wallis test indicated a statistically significant difference in the “Care coordination: quality of care Comparisons of Care coordination scales were made by global measure” between groups, χ2(2) = 6.41, p = lung cancer stage. The stage of disease was described 0.0406 (Table 7.8). Wilcoxon rank sum tests between as those with early or stage I or II disease (n=17, groups indicated that those with stage IV lung cancer 21.25%), those with invasive or stage III disease (median =9.00, IQR = 2.50) scored significantly higher (n=17.00, 21.25%), and those with advanced or stage than those with stage III lung cancer (median 7.00, IQR IV disease (n=46, 57.50%). = 4.00), p=0.0360 (Table 7.5).

Boxplots for each of the care coordination scales are Participants with stage IV lung cancer had median displayed in Figures 7.1 to 7.5, summary statistics are score for the “Care coordination: quality of care displayed in Table 7.2. global measure” scale that was in the highest

quintile, indicating very good global quality of care. A one-way ANOVA test was used with the assumptions The median score was significantly higher than for response variable residuals were normally those with stage III lung cancer, where the median distributed and variances of populations were equal score was in the second highest quintile, indicating (Table 7.3). When the assumptions for normality of good global quality of care. residuals was not met, a Kruskal-Wallis test was used (Table 7.4). Post hoc pairwise comparisons using Wilcoxon rank sum test was used to identify the source of any differences identified in the Kruskal -Wallis test (Table 7.5).

224 Lung Cancer 2018 Australian PEEK Study Section 7 Table 7.2: Care coordination by lung cancer stage summary statistics

PIH Scale Stage Mean SD Median IQR

Stages I and II 37.76 10.94 39.00 17.00 Care coordination: communication Stage III 39.94 8.19 39.00 13.00 Stage IV 39.98 8.57 41.50 11.00 Stages I and II 26.06 3.82 26.00 5.00 Care coordination: navigation Stage III 24.59 4.95 24.00 5.00 Stage IV 26.85 4.43 26.00 6.00 Stages I and II 63.82 13.56 65.00 22.00 Care coordination: total score Stage III 64.53 11.67 60.00 17.00 Stage IV 66.83 11.30 69.50 16.00 Stages I and II 7.12 2.37 8.00 4.00 Care coordination: care coordination global measure Stage III 6.24 2.02 6.00 3.00 Stage IV 7.54 1.91 8.00 2.75 Stages I and II 7.88 1.80 8.00 2.00 Care coordination: quality of care global measure Stage III 6.94 2.16 7.00 4.00 Stage IV 8.39 1.45 9.00 2.50

Table 7.3: Care coordination by lung cancer stage ANOVA table Sum of Mean Care coordination scale DF F p squares Square Care coordination: communication Between groups 65.00 2 32.51 0.40 0.6730 Within groups 6291.00 77 81.70 Total score 6356.00 79 Care coordination: navigation Between groups 63.80 2 31.90 1.63 0.2030 Within groups 1509.00 77 19.60 Total score 15.72.80 79 Care coordination: total score Between groups 141.00 2 70.74 0.50 0.6080 Within groups 10865.00 77 141.11 Total score 11006.00 79

Table 7.4: Care coordination by lung cancer stage Kruskal-Wallis test Care coordination scale X2 df p

Care coordination: care coordination global measure 4.97 2 0.0835 Care coordination: quality of care global measure 6.41 2 0.0406*

* Statistically significant at p<0.05

Table 7.5: Care coordination by lung cancer stage, post hoc pairwise comparisons using Wilcoxon rank sum test Care coordination scale Group Stage I and II Stage III

Stage III 0.3360 Care coordination: quality of care global measure Stage IV 0.3360 0.0360*

* Statistically significant at p<0.05

225 Lung Cancer 2018 Australian PEEK Study Section 7

Care Coordination – Communication Care Coordination – Navigation 35 50 30 40 25 30 20 20

Stage I and II Stage III Stage IV Stage I and II Stage III Stage IV

Figure 7.1: Boxplot of “Care coordination: Figure 7.2: Boxplot of “Care coordination: navigation” communication” by Lung cancer stage by Lung cancer stage

Care Coordination – Total Score Care Coordination – care coordination global measure 10 90 80 8 70 6 60 4 50 40 2

Stage I and II Stage III Stage IV Stage I and II Stage III Stage IV

Figure 7.3: Boxplot of “Care coordination: total score” Figure 7.4: Boxplot of “Care coordination: care by Lung cancer stage coordination global measure” by Lung cancer stage

Care Coordination – quality of care global measure 10 8 6 4 2

Stage I and II Stage III Stage IV

Figure 7.5: Boxplot of “Care coordination: quality of care global measure “ by Lung cancer stage

226 Lung Cancer 2018 Australian PEEK Study Section 7 Comparisons of Care Coordination scores by distant A Wilcoxon rank sum test with continuity correction metastases indicated that the median score for the “Care coordination: quality of care global measure” was Comparisons of Care Coordination scales were made significantly higher for those with distant metastases by distant metastases status. Distant metastases was (Median = 9.00, IQR =2.50) compared to those with no described as those that had disease with distant distant metastases (Median = 8.00, IQR = 3.00), metastases (excluding those with spread to lymph W=561.50, p=0.0289. nodes only) (n=46, 57.50%) compared to those with no distant metastases (n=34, 42.50%). Participants with distant metastases had a median

score for the “Care coordination: quality of care Boxplots for each of the care coordination scales are global measure” scale that was in the highest displayed in Figures 7.6 to 7.10, summary statistics are quintile, indicating very good global quality of care. displayed in Tables 7.6 and 7.7. The median score was significantly higher than

those with no distant metastases, where the A two-sample t-test was used when assumptions for median score was in the second highest quintile, normality and variance were met (Table 7.6), or when indicating good global quality of care. assumptions for normality and variance were not met, a Wilcoxon rank sum test with continuity correction was used (Table 7.7).

Table 7.6: Care coordination by distant metastases two sample t-test

Care coordination scale Distant metastases Mean SD t dF p

No 38.85 9.58 -0.55 78 0.5823 Care coordination: communication Yes 39.98 8.57 No 25.32 4.42 -1.52 78 0.1318 Care coordination: navigation Yes 26.85 4.43 No 64.18 12.46 -0.99 78 0.3241 Care coordination: total score Yes 66.83 11.30

Table 7.7: Care coordination by distant metastases Wilcoxon rank sum test

Care coordination scale Distant metastases Median IQR W p

No 7.00 3.00 602.50 0.0778 Care coordination: care coordination global measure Yes 8.00 2.75 No 8.00 3.00 561.50 0.0289* Care coordination: quality of care global measure Yes 9.00 2.50

* Statistically significant at p<0.05

227 Lung Cancer 2018 Australian PEEK Study Section 7

Care Coordination – Communication Care Coordination – Navigation 35 50 30 40 25 30 20 20

No Yes No Yes

Figure 7.6: Boxplot of “Care coordination: Figure 7.7: Boxplot of “Care coordination: navigation” communication” by distant metastases by distant metastases

Care Coordination – Total Score Care Coordination – care coordination global measure 10 90 80 8 70 6 60 4 50 40 2

No Yes No Yes

Figure 7.8: Boxplot of “Care coordination: total score” Figure 7.9: Boxplot of “Care coordination: care by distant metastases coordination global measure” by distant metastases

Care Coordination – quality of care global measure 10 8 6 4 2

No Yes

Figure 7.10: Boxplot of “Care coordination: quality of care global measure “ by distant metastases

228 Lung Cancer 2018 Australian PEEK Study Section 7 Comparisons of Care Coordination scores by brain A one-way ANOVA test was used with the assumptions metastases for response variable residuals were normally distributed and variances of populations were equal Comparisons of Care coordination scales were by brain (Table 7.9). When the assumptions for normality of metastases status. Those with brain metastases (n=22, residuals was not met, a Kruskal-Wallis test was used 27.50%) were compared to those with other distant (Table 7.10). metastases (excluding those with spread to lymph nodes only; n=24, 30.00 %), and those with no distant No statistically significant differences were metastases (n=34, 42.50%). observed between these two groups for any Care

Coordination scores (Tables 7.9 and 7.10). Boxplots of each Care coordination scale by brain metastases are displayed in Figures 7.11 to 7.15, summary statistics are displayed in Table 7.8.

Table 7.8: Care coordination by brain metastases summary statistics

PIH Scale Group Mean SD Median IQR

Brain metastases 40.91 7.57 41.50 10.50 Care coordination: communication Other distant metastases 39.13 9.47 41.50 10.75 No distant metastases 38.85 9.58 39.00 14.25 Brain metastases 26.00 4.27 26.00 5.75 Care coordination: navigation Other distant metastases 27.63 4.53 26.50 9.00 No distant metastases 25.32 4.42 25.00 5.50 Brain metastases 66.91 10.22 69.00 14.25 Care coordination: total score Other distant metastases 66.75 12.42 69.50 17.00 No distant metastases 64.18 12.46 64.00 18.50 Brain metastases 7.09 2.04 8.00 4.00 Care coordination: care coordination global measure Other distant metastases 7.96 1.71 8.00 2.25 No distant metastases 6.68 2.21 7.00 3.00 Brain metastases 8.14 1.67 8.50 1.75 Care coordination: quality of care global measure Other distant metastases 8.63 1.21 9.00 2.25 No distant metastases 7.41 2.02 8.00 3.00

Table 7.9: Care coordination by brain metastases ANOVA table Sum of Mean Care coordination scale DF F p squares Square Between groups 61.00 2 30.65 0.38 0.6890 Care coordination: communication Within groups 6295.00 77 81.75 Total score 6356.00 79 Between groups 75.70 2 37.87 1.95 0.1500 Care coordination: navigation Within groups 1497.10 77 19.44 Total score 1572.80 79 Between groups 138.00 2 68.77 0.487 0.6160 Care coordination: total score Within groups 10869.00 77 141.16 Total score 11007.00 79

Table 7.10: Care coordination by brain metastases Kruskal-Wallis test Care coordination scale X2 df p

Care coordination: care coordination global measure 4.94 2 0.0844 Care coordination: quality of care global measure 5.46 2 0.0652

229 Lung Cancer 2018 Australian PEEK Study Section 7

Care coordination: communication Care coordination: navigation 35 50 30 40 25 30 20 20

Brain mets Other distant mets No distant mets Brain mets Other distant mets No distant mets

Figure 7.11: Boxplot of “Care coordination: Figure 7.12: Boxplot of “Care coordination: navigation” communication” by brain metastases by brain metastases

Care coordination: total score Care coordination: care coordination global measure 10 90 80 8 70 6 60 4 50 40 2

Brain mets Other distant mets No distant mets Brain mets Other distant mets No distant mets

Figure 7.13: Boxplot of “Care coordination: total score” Figure 7.14: Boxplot of “Care coordination: care by brain metastases coordination global measure” by brain metastases

Care coordination: quality of care global measure 10 8 6 4 2

Brain mets Other distant mets No distant mets

Figure 7.15: Boxplot of “Care coordination: quality of care global measure “ by brain metastases

230 Lung Cancer 2018 Australian PEEK Study Section 7 Comparisons of Care Coordination scores by A two-sample t-test was used when assumptions for Energy/Fatigue normality and variance were met (Table 7.11), or when assumptions for normality and variance were not met, Comparisons of Care coordination scales were made by a Wilcoxon rank sum test with continuity correction energy/fatigue status. Energy/fatigue status was was used (Table 7.12). defined as those with a higher than average score for the cohort in the SF36 energy/fatigue scale “Better No statistically significant differences were energy/fatigue” (n=42, 52.50%) compared to those observed between these two groups for any Care with an average or less score “Worse energy/fatigue” coordination scores. (n=38, 47.50%). Boxplots of each Care coordination by energy/fatigue are displayed in Figures 7.16-7.20.

Table 7.11: Care coordination by energy/fatigue two sample t test

Care coordination scale Fatigue Mean SD t dF p

Better energy/fatigue 27.00 4.66 1.71 78 0.0920 Care coordination: navigation Worse energy/fatigue 25.32 4.11 Better energy/fatigue 67.74 12.11 1.64 78 0.1048 Care coordination: total score Worse energy/fatigue 63.45 11.18

Table 7.12: Care coordination by energy/fatigue Wilcoxon rank sum test with continuity correction

Care coordination scale Fatigue Median IQR W p

Better energy/fatigue 43.50 10.75 959.50 0.1205 Care coordination: communication Worse energy/fatigue 39.00 13.75 Better energy/fatigue 8.00 2.00 973.50 0.0879 Care coordination: care coordination global measure Worse energy/fatigue 7.00 3.00 Better energy/fatigue 8.50 1.00 927.00 0.2065 Care coordination: quality of care global measure Worse energy/fatigue 8.00 2.00

231 Lung Cancer 2018 Australian PEEK Study Section 7

Care Coordination – Communication Care Coordination – Navigation 35 50 30 40 25 30 20 20

Better energy/fatigue Worse energy/fatigue Better energy/fatigue Worse energy/fatigue

Figure 7.16: Boxplot of “Care coordination: Figure 7.17: Boxplot of “Care coordination: navigation” communication” by energy/fatigue by energy/fatigue

Care Coordination – Total Score Care Coordination – care coordination global measure 10 90 80 8 70 6 60 4 50 40 2

Better energy/fatigue Worse energy/fatigue Better energy/fatigue Worse energy/fatigue

Figure 7.18: Boxplot of “Care coordination: total score” Figure 7.19: Boxplot of “Care coordination: care by energy/fatigue coordination global measure” by energy/fatigue

Care Coordination – quality of care global measure 10 8 6 4 2

Better energy/fatigue Worse energy/fatigue

Figure 7.20: Boxplot of “Care coordination: quality of care global measure “ by energy/fatigue

232 Lung Cancer 2018 Australian PEEK Study Section 7 Comparisons of Care Coordination scores by pain 9.00, IQR =2.00) compared to those with more pain (Median = 8.00, IQR = 1.25) (W=983.50, p=0.0312; Comparisons of Care coordination scales were made by Table 7.14). pain status. Pain status was defined as those that scored above average for the cohort in the SF36 Pain The “Care coordination: Communication” mean scale “Less pain” (n=48, 60.00%) compared to those score for participants with less pain was significantly that scored average or below “More pain” (n=32, higher than the median score for those with more 40.00%). Boxplots of each care coordination scale by pain. However, both of these scores were in the pain are displayed in Figures 7.21 – 7.25. middle of the scale indicating moderate communication for both groups. A two-sample t-test was used when assumptions for normality and variance were met (Table 7.13), or when The “Care coordination: total score” mean score assumptions for normality and variance were not met, for participants with less pain was in the second a Wilcoxon rank sum test with continuity correction highest quintile indicating good overall care was used (Table 7.14). A two sample t-test indicated coordination. This score was significantly higher that the mean score for the “Care coordination: compared to participants with more pain with a communication” [t(78) = 2.61, p=0.0109] was median score in the middle of the scale, indicating significantly better for those with less pain (mean = moderate overall care coordination. 41.56 SD= 9.00) compared to those with more pain (Mean = 36.41, SD = 8.10). The “Care coordination: quality of care global A two sample t-test indicated that the mean score for measure” median score for participants with less the “Care coordination: total score” [t(78) = 3.15, pain was in the highest quintile indicating very good p=0.0023] was significantly better for those with less global quality of care. This score was significantly pain (mean = 68.92 SD= 11.30) compared to those with higher compared to participants with more pain more pain (Mean = 60.88, SD = 11.02; Table 7.13). with a median score in the second highest quintile, Wilcoxon rank sum tests with continuity correction indicating good global quality of care. indicated that the median score for “Care coordination: Navigation” was significantly higher for The “Care coordination: Navigation” median score those with less pain (Median = 26.50, IQR =7.00) for participants with less pain was significantly compared to those with more pain (Median = 24.00, higher than the median score for those with more IQR = 5.25) (W=1047.00, p=0.0061; Table 7.14). pain. However, both of these scores were in the Wilcoxon rank sum tests with continuity correction second highest quintile indicating good navigation. indicated that the median score for “Care coordination: quality of care global measure” was significantly higher for those with less pain (Median =

Table 7.13: Care coordination by pain two sample t test

Care coordination scale Pain Mean SD t dF p

Less pain 41.56 9.00 2.61 78 0.0109* Care coordination: communication More pain 36.41 8.10 Less pain 68.92 11.30 3.15 78 0.0023* Care coordination: total score More pain 60.88 11.02

* Statistically significant at p<0.05 Table 7.14: Care coordination by pain Wilcoxon rank sum test with continuity correction

Care coordination scale Pain Median IQR W P

Less pain 26.50 7.00 1047.00 0.0061* Care coordination: navigation More pain 24.00 5.25 Less pain 8.00 3.00 940.00 0.0882 Care coordination: care coordination global measure More pain 7.00 3.00 Less pain 9.00 2.00 983.50 0.0312* Care coordination: quality of care global measure More pain 8.00 1.25

* Statistically significant at p<0.05

233 Lung Cancer 2018 Australian PEEK Study Section 7

Care Coordination – Communication Care Coordination – Navigation 35 50 30 40 25 30 20 20

Less pain More pain Less pain More pain

Figure 7.21: Boxplot of “Care coordination: Figure 7.22: Boxplot of “Care coordination: navigation” communication” by pain by pain

Care Coordination – Total Score Care Coordination – care coordination global measure 10 90 80 8 70 6 60 4 50 40 2

Less pain More pain Less pain More pain

Figure 7.23: Boxplot of “Care coordination: total score” Figure 7.24: Boxplot of “Care coordination: care by pain coordination global measure” by pain

Care Coordination – quality of care global measure 10 8 6 4 2

Less pain More pain

Figure 7.25: Boxplot of “Care coordination: quality of care global measure “ by pain

234 Lung Cancer 2018 Australian PEEK Study Section 7 Comparisons of Care Coordination scores by gender variance were not met, a Wilcoxon rank sum test with Comparisons of Care coordination scales were made by continuity correction was used (Table 7.16). gender, females (n=66, 82.50%) were compared with males (n=14, 17.50%). Boxplots of each Care No statistically significant differences were coordination scale by gender are displayed in Figures observed between females and males for any of the 7.26-7.30. A two-sample t-test was used when Care coordination scales. assumptions for normality and variance were met (Table 7.15), or when assumptions for normality and

Table 7.15: Care coordination by gender two sample t test

Care coordination scale Gender Mean SD t dF p

Female 39.56 9.29 0.13 78 0.8966 Care coordination: communication Male 39.21 7.59 Female 26.23 4.61 0.12 78 0.9064 Care coordination: navigation Male 26.07 3.85 Female 65.79 12.17 0.14 78 0.8861 Care coordination: total score Male 65.29 10.31

Table 7.16: Care coordination by gender Wilcoxon rank sum test

Care coordination scale Gender Median IQR W p

Female 8.00 4.00 463.50 0.9898 Care coordination: care coordination global measure Male 7.00 3.00 Female 8.00 2.00 482.00 0.8011 Care coordination: quality of care global measure Male 8.00 2.00

235 Lung Cancer 2018 Australian PEEK Study Section 7

Care Coordination – Communication Care Coordination – Navigation 35 50 30 40 25 30 20 20

Female Male Female Male

Figure 7.26: Boxplot of “Care coordination: Figure 7.27: Boxplot of “Care coordination: navigation” communication” by gender by gender

Care Coordination – Total Score Care Coordination – care coordination global measure 10 90 80 8 70 6 60 4 50 40 2

Female Male Female Male

Figure 7.28: Boxplot of “Care coordination: total score” Figure 7.29: Boxplot of “Care coordination: care by gender coordination global measure” by gender

Care Coordination – quality of care global measure 10 8 6 4 2

Female Male

Figure 7.30: Boxplot of “Care coordination: quality of care global measure “ by gender

236 Lung Cancer 2018 Australian PEEK Study Section 7 Comparisons of Care Coordination scores by age for normality and variance were not met, a Wilcoxon rank sum test with continuity correction was used Comparisons of Care coordination scales were made by (Table 7.18). age, those that were 55 and older (n=36, 45.00%) were compared with those that were aged between 18 and No statistically significant differences were 54 (n=44, 55.00%). observed between older and younger participants

for any of the care coordination scales. Boxplots of each Care coordination scale by age are displayed in Figures 7.31-7.35. A two-sample t-test was used when assumptions for normality and variance were met (Table 7.17), or when assumptions

Table 7.17: Care coordination by age two sample t test

Care coordination scale Age Mean SD t dF p

Older (55 and older) 38.39 10.13 -1.00 78 0.3193 Care coordination: communication Younger (18 to 54) 40.41 7.90 Older (55 and older) 26.56 3.97 0.64 78 0.5226 Care coordination: navigation Younger (18 to 54) 25.91 4.86 Older (55 and older) 64.94 13.04 -0.52 78 0.6077 Care coordination: total score Younger (18 to 54) 66.32 10.80

Table 7.18: Care coordination by age Wilcoxon test with continuity correction

Care coordination scale Age Median IQR W p

Older (55 and older) 8.00 4.00 819 0.7953 Care coordination: care coordination global measure Younger (18 to 54) 7.00 3.00 Older (55 and older) 8.00 2.25 863 0.4866 Care coordination: quality of care global measure Younger (18 to 54) 8.00 2.00

Lung Cancer 2018 Australian PEEK Study 237 Section 7

Care Coordination – Communication Care Coordination – Navigation 35 50 30 40 25 30 20 20

Older Younger Older Younger

Figure 7.31: Boxplot of “Care coordination: Figure 7.32: Boxplot of “Care coordination: navigation” communication” by age by age

Care Coordination – Total Score Care Coordination – care coordination global measure 10 90 80 8 70 6 60 4 50 40 2

Older Younger Older Younger

Figure 7.33: Boxplot of “Care coordination: total score” Figure 7.34: Boxplot of “Care coordination: care by age coordination global measure” by age

Care Coordination – quality of care global measure 10 8 6 4 2

Older Younger

Figure 7.35: Boxplot of “Care coordination: quality of care global measure “ by age

238 Lung Cancer 2018 Australian PEEK Study Section 7 Comparisons of Care Coordination scores by location variance were met (Table 7.19), or when assumptions for normality and variance were not met, a Wilcoxon Comparisons of Care coordination scales were made by rank sum test with continuity correction was used location. The location of participants was evaluated by (Table 7.20). postcode using the Australian Statistical Geography Maps (ASGS) Remoteness areas accessed from No statistically significant differences were DoctorConnect (doctorconnect.gov.au), those living in observed between those that live in metropolitan a metropolitan area (n=65, 81.25%) were compared to areas and those that live in regional or remote areas those living in regional or remote areas (n= 15, 18.75%). for any of the Care coordination scales. Boxplots of each Care coordination scale by location are displayed in Figures 7.36 – 7.40. A two-sample t- test was used when assumptions for normality and

Table 7.19: Care coordination by location two sample t test

Care coordination scale Location Mean SD t dF p

Metropolitan 39.68 9.04 0.37 78 0.7159 Care coordination: communication Regional or remote 38.73 8.93 Metropolitan 66.06 11.68 0.57 78 0.5718 Care coordination: total score Regional or remote 64.13 12.63

Table 7.20: Care coordination by location Wilcoxon test with continuity correction

Care coordination scale Location Median IQR W p

Metropolitan 26.00 6.00 544.50 0.4849 Care coordination: navigation Regional or remote 25.00 6.50 Metropolitan 8.00 3.00 547.50 0.4578 Care coordination: care coordination global measure Regional or remote 6.00 5.00 Metropolitan 8.00 2.00 571.50 0.2936 Care coordination: quality of care global measure Regional or remote 8.00 4.00

239 Lung Cancer 2018 Australian PEEK Study Section 7

Care Coordination – Communication Care Coordination – Navigation 35 50 30 40 25 30 20 20

Metropolitan Regional or remote Metropolitan Regional or remote

Figure 7.36: Boxplot of “Care coordination: Figure 7.37: Boxplot of “Care coordination: navigation” communication” by location by location

Care Coordination – Total Score Care Coordination – care coordination global measure 10 90 80 8 70 6 60 4 50 40 2

Metropolitan Regional or remote Metropolitan Regional or remote

Figure 7.38: Boxplot of “Care coordination: total score” Figure 7.39: Boxplot of “Care coordination: care by location coordination global measure” by location

Care Coordination – quality of care global measure 10 8 6 4 2

Metropolitan Regional or remote

Figure 7.40: Boxplot of “Care coordination: quality of care global measure “ by location

240 Lung Cancer 2018 Australian PEEK Study Section 7 Comparisons of Care Coordination scores by Assumptions for normality and variance for a two education sample t test were not met , a Wilcoxon rank sum test with continuity correction was used (Table 7.21). Comparisons of Care coordination scales were made by education. Education status, was defined as those No statistically significant differences were with university degree (n= 40, 50.00%) and those with observed between those that with a university high school or trade (n=40, 50.00%). Boxplots of each qualification and those with high school or trade Care coordination scale by education are displayed in qualifications for any of the Care coordination Figures 7.41-7.45. scales.

Table 7.21: Care coordination by education Wilcoxon test with continuity correction

Care coordination scale Education Median IQR W p

Trade or high school 39.00 10.25 735.50 0.5376 Care coordination: communication University 42.50 12.75 Trade or high school 25.00 4.00 605.50 0.0612 Care coordination: navigation University 27.00 7.75 Trade or high school 66.00 13.25 665.00 0.1953 Care coordination: total score University 71.50 20.25 Trade or high school 7.00 2.25 754.00 0.6576 Care coordination: care coordination global measure University 8.00 4.00 Trade or high school 8.00 2.00 740.50 0.5624 Care coordination: quality of care global measure University 9.00 2.25

241 Lung Cancer 2018 Australian PEEK Study Section 7

Care Coordination – Communication Care Coordination – Navigation 35 50 30 40 25 30 20 20

Trade or high school University Trade or high school University

Figure 7.41: Boxplot of “Care coordination: Figure 7.42: Boxplot of “Care coordination: navigation” communication” by education by education

Care Coordination – Total Score Care Coordination – care coordination global measure 10 90 80 8 70 6 60 4 50 40 2

Trade or high school University Trade or high school University

Figure 7.43: Boxplot of “Care coordination: total score” Figure 7.44: Boxplot of “Care coordination: care by education coordination global measure” by education

Care Coordination – quality of care global measure 10 8 6 4 2

Trade or high school University

Figure 7.45: Boxplot of “Care coordination: quality of care global measure “ by education

242 Lung Cancer 2018 Australian PEEK Study Section 7 Comparisons of Care Coordination scores by SEIFA normality and variance were not met, a Wilcoxon rank sum test with continuity correction was used (Table Comparisons of Care coordination scales were made by 7.23). Socio-economic Indexes for Areas (SEIFA), SEIFA scores range from 1 to 10, a higher score denotes a higher No statistically significant differences were level of advantage. observed between these two groups for any Care

Coordination scores. Boxplots of each Care coordination scale by SEIFA are displayed in Figures 7.46- 7.50. A two-sample t-test was used when assumptions for normality and variance were met (Table 7.22), or when assumptions for

Table 7.22: Care coordination by SEIFA two sample t test

Care coordination scale SEIFA Mean SD t dF p

High SEIFA 39.76 9.00 0.33 78 0.7402 Care coordination: communication Mid - Low SEIFA 39.07 9.05 High SEIFA 66.64 11.67 0.92 78 0.3611 Care coordination: total score Mid - Low SEIFA 64.13 12.06

Table 7.23: Care coordination by SEIFA Wilcoxon test with continuity correction

Care coordination scale SEIFA Median IQR W p

High SEIFA 26.00 5.75 924.00 0.0838 Care coordination: navigation Mid - Low SEIFA 25.00 6.00 High SEIFA 8.00 3.75 778.00 0.7821 Care coordination: care coordination global measure Mid - Low SEIFA 7.00 3.75 High SEIFA 8.00 2.00 817.50 0.4968 Care coordination: quality of care global measure Mid - Low SEIFA 8.00 2.00

243 Lung Cancer 2018 Australian PEEK Study Section 7

Care Coordination – Communication Care Coordination – Navigation 35 50 30 40 25 30 20 20

Mid - Low SEIFA High SEIFA Mid - Low SEIFA High SEIFA

Figure 7.46: Boxplot of “Care coordination: Figure 7.47: Boxplot of “Care coordination: navigation” communication” by SEIFA by SEIFA

Care Coordination – Total Score Care Coordination – care coordination global measure 10 90 80 8 70 6 60 4 50 40 2

Mid - Low SEIFA High SEIFA Mid - Low SEIFA High SEIFA

Figure 7.48: Boxplot of “Care coordination: total score” Figure 7.49: Boxplot of “Care coordination: care by SEIFA coordination global measure” by SEIFA

Care Coordination – quality of care global measure 10 8 6 4 2

Mid - Low SEIFA High SEIFA

Figure 7.50: Boxplot of “Care coordination: quality of care global measure “ by SEIFA

Lung Cancer 2018 Australian PEEK Study 244 Section 7 Experience of care and support Friends and family based, it was making sure that my family had what we needed in the way of they always Care and support received saw that we didn't have to worry about cooking. There was always people we could call on to- plenty This question aims to investigate what services of people to call on to take me to treatment if needed patients consider to be support and care services. The or to get the kids to or from school or to or from the most common description of care and support was sporting activities. The village jumped in to effect from family and friends (n=61; 76.25%). This was there. We don't have immediate family around us, so followed by receiving support through charities (n=29; we've had to rely on the friends, which has been 36.25%), support through clinical trials (n=20; 25.00%), wonderful. They've been really good. Participant 71 support groups (n=16; 20.00%) and support through online portals including Facebook (n=10; 12.50%). Would just be friends and obviously, my family have been wonderful and friends have been wonderful too. In relation to sub-group variations, participants with I haven't really needed any other support groups. stage I and II lung cancer (58.82%), described support Participant 77 from family and friends less frequently than the general population (76.25%). Participants with stage III Participant describes receiving support through lung cancer (47.06%), those from remote or regional charities areas (53.33%) and those with a university education (50.00%) described support though charities more Who else? The Lung Cancer Foundation down at frequently than the general population (36.25%), while LOCATION. They were brilliant, so in those, a nurse those with a trade or high school education (22.50%) there and I cannot remember his name for a life of me described this less frequently. Participants with brain that runs that with a lady called... Participant 28 metastases (31.82%) described support through support groups more frequently than the general Some lung foundation support nurse, NAME; she's population (20.00%). Participants with stage III lung absolutely amazing. I've just developed a really good cancer (29.41%) described support through online relationship with her and I never felt like I needed to portals more frequently than the general population contact her but yet, she's quite good at knowing. (12.50%). Participants with stage I and II lung cancer She'll often say, "How are you going?" and really, (23.53%) described accessing domestic support more actually, genuinely want to know. She's great. frequently than the general population (8.75%). There Participant 67 were no participants from regional or remote areas that described support from accessing a psychologist Participant describes receiving support through peer (general population 11.25%). support (Support group)

Participant describes support from family and friends As I said, the last few weeks, we've been in touched with the Lung Foundation and various support groups, Yes, I’ve had visits from family and friends from out of which is good. Participant 54 state that have come and stayed and sort of helped to…Especially when my husband was away after all I went to a cancer support group down in LOCATION. these treatments and everything. He had to go away They were fantastic because I really wanted to go to in September and I had a girlfriend that came down a face-to-face group. I went to a women's support and stayed with me for a couple of days and just sort group there for a long time, and that was a really of helped out and we hadn't seen each other for a long great. They do nutrition courses and yoga course... time before that anyway. That was really nice, both Then the Lung Foundation, the support group, the because it gave me the company but also it meant telephone support group. Participant 69 that I had somebody else there with me because my daughter was working during the day so as a Participant describes receiving support through peer distraction and someone to do stuff and things if I support (Facebook and online portals) needed to. I’ve got several other friends…that I'm on the phone with all the time or Skype, they're very I guess my Facebook group and the Lung Foundation supportive. Participant 2 is brilliant and they send me information, I’ve been to conferences and seminars and so on. Participant 40

Lung Cancer 2018 Australian PEEK Study 245 Section 7 groups because a lot of us are advocates and we I find the online ones to be much more powerful. I've attend conferences and things together. Then, in actually developed amazing relationships with the developing that relationship, it's just an easy phone people in that, from Australia, in the group, all the call to them, as required. Participant 67

Table 7.24 : Care and support received Care and support received All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes support from family and friends 61 76.25 10 58.82 13 76.47 38 82.61 23 67.65 Participant describes receiving support through charities 29 36.25 5 29.41 8 47.06 16 34.78 13 38.24 Participant describes receiving support through 16 20.00 2 11.76 2 11.76 12 26.09 4 11.76 peer support (Support group) Participant describes receiving support through peer support (Facebook and online portals) 10 12.50 1 5.88 5 29.41 4 8.70 6 17.65 Participant describes accessing a psychologist 9 11.25 3 17.65 1 5.88 5 10.87 4 11.76

Participant describes accessing domestic 7 8.75 4 23.53 1 5.88 2 4.35 5 14.71 services/support Participant describes accessing a counsellor 7 8.75 1 5.88 2 11.76 4 8.70 3 8.82 Participant describes challenges of family staying 7 8.75 3 17.65 1 5.88 3 6.52 4 11.76 long-term Care and support received All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes support from family and friends 61 76.25 18 81.82 20 83.33 23 67.65 32 76.19 29 76.32 Participant describes receiving support through charities 29 36.25 7 31.82 9 37.50 13 38.24 17 40.48 12 31.58 Participant describes receiving support 16 20.00 7 31.82 5 20.83 4 11.76 10 23.81 6 15.79 through peer support (Support group) Participant describes receiving support through peer support (Facebook and online 10 12.50 2 9.09 2 8.33 6 17.65 8 19.05 2 5.26 portals) Participant describes accessing a psychologist 9 11.25 3 13.64 2 8.33 4 11.76 3 7.14 6 15.79 Participant describes accessing domestic services/support 7 8.75 2 9.09 0 0.00 5 14.71 2 4.76 5 13.16 Participant describes accessing a counsellor 7 8.75 0 0.00 4 16.67 3 8.82 3 7.14 4 10.53 Participant describes challenges of family 7 8.75 2 9.09 1 4.17 4 11.76 3 7.14 4 10.53 staying long-term

Lung Cancer 2018 Australian PEEK Study 246 Section 7 Table 7.24 : Care and support received (continued) Care and support received All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes support from family and friends 61 76.25 36 75.00 25 78.13 24 66.67 37 84.09 Participant describes receiving support through charities 29 36.25 16 33.33 13 40.63 16 44.44 13 29.55 Participant describes receiving support through 16 20.00 10 20.83 6 18.75 7 19.44 9 20.45 peer support (Support group) Participant describes receiving support through peer support (Facebook and online portals) 10 12.50 6 12.50 4 12.50 2 5.56 8 18.18 Participant describes accessing a psychologist 9 11.25 7 14.58 2 6.25 5 13.89 4 9.09

Participant describes accessing domestic 7 8.75 2 4.17 5 15.63 5 13.89 2 4.55 services/support Participant describes accessing a counsellor 7 8.75 5 10.42 2 6.25 2 5.56 5 11.36 Participant describes challenges of family staying long-term 7 8.75 4 8.33 3 9.38 4 11.11 3 6.82

Care and support received All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes support from family and friends 61 76.25 49 75.38 12 80.00 29 72.50 32 80.00 39 78.00 22 73.33 Participant describes receiving support through charities 29 36.25 21 32.31 8 53.33 9 22.50 20 50.00 19 38.00 10 33.33 Participant describes receiving support 16 20.00 14 21.54 2 13.33 6 15.00 10 25.00 13 26.00 3 10.00 through peer support (Support group) Participant describes receiving support through peer support (Facebook and 10 12.50 7 10.77 3 20.00 5 12.50 5 12.50 6 12.00 4 13.33 online portals) Participant describes accessing a psychologist 9 11.25 9 13.85 0 0.00 4 10.00 5 12.50 7 14.00 2 6.67 Participant describes accessing domestic services/support 7 8.75 5 7.69 2 13.33 5 12.50 2 5.00 1 2.00 6 20.00 Participant describes accessing a counsellor 7 8.75 6 9.23 1 6.67 2 5.00 5 12.50 5 10.00 2 6.67 Participant describes challenges of family staying long-term 7 8.75 7 10.77 0 0.00 5 12.50 2 5.00 5 10.00 2 6.67

90.00

80.00

70.00

60.00

50.00

40.00

30.00

20.00

10.00

0.00 Family and friends Charities (incl in kind Peer support (Support Peer support Psychologist services Domestic services Counselling services Challenge: access or info about support) group) (Facebook/Online) support in hospital/clinic Figure 7.51: Care and support received (% of all participants)

247 Lung Cancer 2018 Australian PEEK Study Section 8

Section 8 Quality of life

Lung Cancer 2018 Australian PEEK Study Section 8

249 Lung Cancer 2018 Australian PEEK Study Section 8 Anxiety and fear of progression • The Fear of Progression questionnaire measures the level of anxiety people experience in relation to their conditions. The Fear of Progression questionnaire comprises a total score, with a higher score denoting increased anxiety. Overall the entire cohort had a mean total score of 37.00, which is a score in the middle of the scale. Fear of progression – by lung cancer stage • The lung cancer stage of disease was described as those with early or stages I or II disease (N=17, 21.25%), those with invasive or stage III disease (N=17.00, 21.25%), and those with advanced or stage IV disease (N=46, 57.50%). • There was no statistically significant difference observed in the fear of progression total score between participants with different stages of lung cancer Fear of progression – by distant metastases • Distant metastases was described as those that had disease with distant metastases (excluding those with spread to lymph nodes only) (N=46, 57.50%) compared to those no distant metastases (N=34, 42.50%). • Participants with no distant metastases had a mean score for the “Fear of progression total score” that was statistically significantly higher than those with distant metastases. However, both scores were in the middle of the scale indicating anxiety. Fear of progression – by brain metastases • Brain metastases was described as those with brain metastases (N=22, 27.50%) were compared to those with other distant metastases (excluding those with spread to lymph nodes only) (N=24, 30.00 %), and those with no distant metastases (N=34, 42.50%). • There was no statistically significant difference observed in the fear of progression total score between participants with brain metastases, other distant metastases, and no distant metastases. Fear of progression – by energy/fatigue • Energy/fatigue was described as those with a higher than average score for the cohort in the SF36 energy/fatigue scale, better energy/fatigue (N=42, 52.50%) compared to those with an average or less score, worse energy/fatigue (N=38, 47.50%) • There was no statistically significant difference observed in the fear of progression total score between participants with better energy/fatigue and worse energy/fatigue. Fear of progression – by pain • Pain was described as those that scored above average for the cohort in the SF36 Pain scale, less pain (N=48, 60.00%) compared to those that scored average or below, more pain (N=32, 40.00%). • Participants with more pain had a mean score for the “Fear of progression total score” that was statistically significantly higher than those with less pain. However, both scores were in the middle of the scale indicating moderate scores. Fear of progression – by gender • The gender of participants, females (N=66, 82.50%) were compared with males (N=14, 17.50%). • There was no statistically significant difference observed in the fear of progression total score between male and female participants. Fear of progression – by age • The age of the participants, those that were 55 and older, older (55 and older) (N=36, 45.00%) were compared with those that were aged between 18 and 54, younger (18 to 54) (N=44, 55.00%). • There was no statistically significant difference observed in the fear of progression total score between older (55 and older) and younger (18 to 54) participants.

250 Lung Cancer 2018 Australian PEEK Study Section 8 Fear of progression – by location • The location of participants was evaluated by postcode using the Australian Statistical Geography Maps (ASGS) Remoteness areas, those living in a metropolitan area, metropolitan (N=65, 81.25%) were compared to those living in regional/rural areas, regional or remote (N=15, 18.75%). • There was no statistically significant difference observed in the fear of progression total score between participants that live in metropolitan areas and those that live in regional or remote areas. Fear of progression – by level of education • Education status, between those with a university degree, university (N= 40, 50.00%), and those with trade or high school qualifications, trade or high school (N=40, 50.00%) • There was no statistically significant difference observed in the fear of progression total score between older (55 and older) and younger (18 to 54) participants with university qualifications and those with trade or high school qualifications. Fear of progression – by SEIFA • Socio-economic Indexes for Areas (SEIFA) scores range from 1 to 10, a higher score denotes a higher level of advantage. Those with a higher SEIFA score of 7-10, high SEIFA (N=50, 62.50%) compared to those with a mid to low SEIFA score of 1-6, mid-low SEIFA (N=30, 37.50%). • There was no statistically significant difference observed in the fear of progression total score between participants that live in an area with a higher SEIFA score and those that live in an area with a mid-low SEIFA score.

251 Lung Cancer 2018 Australian PEEK Study Section 8

Experience of quality of life Participant describes negative impact on QOL due to the emotional/psychological and physical strain on Impact on quality of life their family/partner

Overall, there were 68 participants (85.00%) that For my partner, I think it's completely impacted her described a negative impact on quality of life. The most quality of life. She has spent a lot of the time looking common themes in relation to having a negative after me and simple things, she now does all the impact on quality of life included a negative impact on shopping and still does. I go round in the car and pick themselves and their family due to emotional and her up. She had to take on all the cooking, before we physical impact of lung cancer (n=44; 55.00%), and used to share all of those things and just managing all reduced capacity for physical activity (n=32; 55.00%). the treatment, when I was really sick, just keeping an There were also 22 participants (27.50%) that eye on all the medication. It's almost like a full-time described a negative impact the shock of diagnosis and job for her but also emotionally, really tough, and in having to tell family or friends. fact caused her to get unwell. She's better now. We're both better now [giggles] We're feeling a lot In contrast, there were 17 participants (21.25%) that optimistic about the potential outcome, or certainly described minimal impact on quality of life and seven about the quality of life. Participant 22 participants (8.75%) that noted that their personal relationships had been strengthened. Yes, 100%...I'm now dependent on my wife to do everything for me and I've stopped working. Basically, In relation to sub-group variation, all participants with I've come from being someone who was working and stage I and II lung cancer (100.00%) reported an overall fit enough to do things for myself to being to someone negative impact (general population 85.00%). who's dependent on my wife to feed me, to bathe me. Participants with more pain (96.88%) reported this Participant 35 more frequently than the general population, while those from regional or remote areas (73.33%) reported It's had quite a serious effect on my wife. She's had to this less frequently. Participants with stage III cancer carry a lot of it because at times I was barely conscious (41.18%), those with other metastases (33.33%) when I was in hospitals. She remembers things I don't reported the emotional and physical impact, less and she said, "Yes, I witnessed, my brother was at my frequently than the general population (55.00%), while bedside round about Christmas 2015, and he was those with stage I and II lung cancer (82.35%) and those going back to LOCATION, and we had to fly, and didn't with brain metastases (68.18%), reported this more know whether I was going to be alive when he got frequently. Participants with stage I and II lung cancer back. Deep shit, we got through that. Well, the long (58.82%) described a reduced capacity for physical and the short of it, is she's done a lot of work and been activity, more frequently than the general population there all along and she's had a couple of bouts of (40.00%). Participants with stage III lung cancer anxiety and depression. Participant 77 (11.76%) and those with stage I to III lung cancer and no distant metastases (14.71%), described the shock of Participant describes negative impact on QOL due to diagnosis and having to tell family or friends, less reduced capacity for physical activity frequently than the general population (27.50%), while those with brain metastases (45.45%) described this But it has affected us in a big way. I try not to mention more frequently. Participants with stage III lung cancer it nowadays but after they tell me that I probably (29.41%) described anxiety related to ongoing couldn't go to the gym for quite some time I wanted treatment/monitoring for recurrence, more frequently to prove them wrong. So during recovery at home no than the general population (11.25%), while there one was home so I'd go to my to go get some weights were no participants with brain metastases that and try and build up my the right size because I had described this. Participants with other metastases no I couldn't lift my arm up at all and it probably only (20.83%) described worry in relation to prognosis or took about four months for me to actually be able to inability to plan for future, more frequently than the lift my arm up again in the air. Yeah. So that was I just general population. made sure that that was because gym you know I wanted to continue exercising and exercising for such a long time. Participant 3

252 Lung Cancer 2018 Australian PEEK Study Section 8 Yes. It's definitely affected the quality of life of my say to him, "It's okay, Dad." He's like, "Oh, no, I want family and me. My quality of life being a very active, to be there, I want to be there.” Participant 15 get-up-and-go type of guy, gardener and stuff like that. I can't do half, not even a half of stuff but I just Participant describes negative impact on QOL in got to do...I don't have the energy to just…You try to relation to the shock of diagnosis and having to tell get on with your life but I'm far more…I feel like I'm family or friends prepared to be quiet and not have noise. You can't do the stuff you used to do. Participant 29 I think that the dealing with the side effects of the treatment has really had a big impact on the quality Initially, before the treatment took effect, I was of my life. On my family, my partner in particular, has basically out of it. With that cough, not being able to taken on a much more of a carer's role, especially sleep, being very low in energy certain regular when I got out of hospital. Initially, they were all activities, group activities I just dropped right out. I shocked because, "Nothing happens to NAME. She's couldn't keep up. I couldn't do my usual physical such a strong person." Now it's like, "You'll be all activities either like walking or what have you. That right," and it's business as usual for the rest of the was one of the physical effects on me. Participant 53 family. It's only really NAME who sees it day to day who's been affected by it, and having to deal with Participant describes negative impact on QOL in listening to me about how I'm tired, and I'm sleeping relation to the shock of diagnosis and having to tell under the toilet. [laughs] I think it bothers him. family or friends Participant 60

I know it affected my parents quite a bit at the Participant describes minimal impact on QOL beginning. You know to hear that your daughter has lung cancer at the age of 41 he's probably not going Apart from that, it's basically fine. My family are to have anyone would wanting it especially was that happy that I'm doing well, I'm happy that I'm doing my healthiest and I was a gym freak in you know for well. Like I said I try to live a normal life. I feel normal. you one is quite young to be diagnosed with any sort I don't feel like I've got lung cancer at all, so that's of cancer but I think it affected my parents probably good. Participant 9 and my sister the most. Participant 3 At the moment, it doesn't really affect it too much. It was devastating at the beginning of course, and it The main thing is the side effects of the treatment. I was for everybody. The kids, at that stage I had…my have joint and muscular pain, but I take medication little grandson was only four, and then NAME told for that and I go the gym a lot. It doesn't really affect them, and it was absolutely devastating. They were in my…I'm not working at the moment, which is tears and all this sort of stuff. They're not blasé about wonderful, but that's only because I've got income it now, but don't think about it too much. When they protection. Had I not had that, then I might have had come here, I can't do much for them, but then NAME to push myself to going back to work, which would be was six at the end of this month, so he's not a baby a completely different scenario. Participant 20 anymore. I can't really hold the baby too much. I sit her on the table and I play with her and that sort of It hasn't changed it. I don't know whether it's changed thing, but as she starts to walk around, I can't carry it. I think it's improved it. It's improved it I think. her like I did with all the other kids. My dad gets really Initially, once you work out the psychological stuff upset. He's 90. He comes to every single treatment and how far it pushes you to how far it doesn't push that I have. He meets me at the hospital. I've tried to you. Participant 73

253 Lung Cancer 2018 Australian PEEK Study Section 8 Table 8.1: Impact on quality of life Impact on quality of life All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes negative impact on QOL 68 85.00 17 100.00 14 82.35 37 80.43 31 91.18 (Overall) Participant describes negative impact on QOL due to the emotional/psychological and physical strain 44 55.00 14 82.35 7 41.18 23 50.00 21 61.76 on their family/partner

Participant describes negative impact on QOL due to reduced capacity for physical activity 32 40.00 10 58.82 6 35.29 16 34.78 16 47.06 Participant describes negative impact on QOL in relation to the shock of diagnosis and having to 22 27.50 3 17.65 2 11.76 17 36.96 5 14.71 tell family or friends Participant describes negative impact on QOL due to fatigue associated with cancer or treatment, 10 12.50 1 5.88 3 17.65 6 13.04 4 11.76 including no longer being able to work Participant describes negative impact on QOL due to anxiety related to ongoing 9 11.25 2 11.76 5 29.41 2 4.35 7 20.59 treatment/monitoring for recurrence Participant describes negative impact on QOL due to worry re prognosis or inability to plan for 8 10.00 1 5.88 2 11.76 5 10.87 3 8.82 future due to illness/treatment Participant describes negative impact on QOL of family due to financial impact of 7 8.75 1 5.88 1 5.88 5 10.87 2 5.88 treatment/inability to keep working Participant describes negative impact on QOL during initial treatment 7 8.75 2 11.76 1 5.88 4 8.70 3 8.82 Participant describes minimal impact on QOL 17 21.25 2 11.76 2 11.76 13 28.26 4 11.76 Participant describes ways in which relationships 7 8.75 1 5.88 1 5.88 5 10.87 2 5.88 have strengthened Impact on quality of life All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes negative impact on 68 85.00 19 86.36 18 75.00 31 91.18 33 78.57 35 92.11 QOL (Overall) Participant describes negative impact on QOL due to the emotional/psychological 44 55.00 15 68.18 8 33.33 21 61.76 20 47.62 24 63.16 and physical strain on their family/partner Participant describes negative impact on QOL due to reduced capacity for physical 32 40.00 7 31.82 9 37.50 16 47.06 16 38.10 16 42.11 activity Participant describes negative impact on QOL in relation to the shock of diagnosis 22 27.50 10 45.45 7 29.17 5 14.71 10 23.81 12 31.58 and having to tell family or friends Participant describes negative impact on QOL due to fatigue associated with cancer 10 12.50 1 4.55 5 20.83 4 11.76 5 11.90 5 13.16 or treatment, including no longer being able to work Participant describes negative impact on QOL due to anxiety related to ongoing 9 11.25 0 0.00 2 8.33 7 20.59 6 14.29 3 7.89 treatment/monitoring for recurrence Participant describes negative impact on QOL due to worry re prognosis or inability 8 10.00 0 0.00 5 20.83 3 8.82 1 2.38 7 18.42 to plan for future due to illness/treatment Participant describes negative impact on QOL of family due to financial impact of 7 8.75 3 13.64 2 8.33 2 5.88 4 9.52 3 7.89 treatment/inability to keep working Participant describes negative impact on QOL during initial treatment 7 8.75 1 4.55 3 12.50 3 8.82 4 9.52 3 7.89 Participant describes minimal impact on QOL 17 21.25 7 31.82 6 25.00 4 11.76 10 23.81 7 18.42 Participant describes ways in which 7 8.75 1 4.55 4 16.67 2 5.88 5 11.90 2 5.26 relationships have strengthened

254 Lung Cancer 2018 Australian PEEK Study Section 8 Table 8.1: Impact on quality of life (continued) Impact on quality of life All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes negative impact on QOL 68 85.00 37 77.08 31 96.88 30 83.33 38 86.36 (Overall) Participant describes negative impact on QOL due to the emotional/psychological and physical strain 44 55.00 26 54.17 18 56.25 19 52.78 25 56.82 on their family/partner Participant describes negative impact on QOL due to reduced capacity for physical activity 32 40.00 20 41.67 12 37.50 12 33.33 20 45.45 Participant describes negative impact on QOL in relation to the shock of diagnosis and having to 22 27.50 10 20.83 12 37.50 8 22.22 14 31.82 tell family or friends Participant describes negative impact on QOL due to fatigue associated with cancer or treatment, 10 12.50 4 8.33 6 18.75 3 8.33 7 15.91 including no longer being able to work Participant describes negative impact on QOL due to anxiety related to ongoing 9 11.25 4 8.33 5 15.63 2 5.56 7 15.91 treatment/monitoring for recurrence Participant describes negative impact on QOL due to worry re prognosis or inability to plan for 8 10.00 2 4.17 6 18.75 4 11.11 4 9.09 future due to illness/treatment Participant describes negative impact on QOL of family due to financial impact of 7 8.75 4 8.33 3 9.38 1 2.78 6 13.64 treatment/inability to keep working Participant describes negative impact on QOL during initial treatment 7 8.75 3 6.25 4 12.50 1 2.78 6 13.64 Participant describes minimal impact on QOL 17 21.25 13 27.08 4 12.50 8 22.22 9 20.45 Participant describes ways in which relationships 7 8.75 4 8.33 3 9.38 3 8.33 4 9.09 have strengthened Impact on quality of life All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes negative impact 68 85.00 57 87.69 11 73.33 37 92.50 31 77.50 42 84.00 26 86.67 on QOL (Overall) Participant describes negative impact on QOL due to the 44 55.00 37 56.92 7 46.67 21 52.50 23 57.50 28 56.00 16 53.33 emotional/psychological and physical strain on their family/partner Participant describes negative impact on QOL due to reduced capacity for 32 40.00 30 46.15 2 13.33 17 42.50 15 37.50 20 40.00 12 40.00 physical activity Participant describes negative impact on QOL in relation to the shock of 22 27.50 17 26.15 5 33.33 12 30.00 10 25.00 13 26.00 9 30.00 diagnosis and having to tell family or friends Participant describes negative impact on QOL due to fatigue associated with cancer or treatment, including no 10 12.50 9 13.85 1 6.67 5 12.50 5 12.50 5 10.00 5 16.67 longer being able to work Participant describes negative impact on QOL due to anxiety related to 9 11.25 8 12.31 1 6.67 5 12.50 4 10.00 5 10.00 4 13.33 ongoing treatment/monitoring for recurrence Participant describes negative impact on QOL due to worry re prognosis or inability to plan for future due to 8 10.00 5 7.69 3 20.00 3 7.50 5 12.50 3 6.00 5 16.67 illness/treatment Participant describes negative impact on QOL of family due to financial 7 8.75 7 10.77 0 0.00 3 7.50 4 10.00 3 6.00 4 13.33 impact of treatment/inability to keep working Participant describes negative impact on QOL during initial treatment 7 8.75 6 9.23 1 6.67 4 10.00 3 7.50 6 12.00 1 3.33 Participant describes minimal impact on QOL 17 21.25 13 20.00 4 26.67 7 17.50 10 25.00 14 28.00 3 10.00 Participant describes ways in which 7 8.75 4 6.15 3 20.00 2 5.00 5 12.50 3 6.00 4 13.33 relationships have strengthened

255 Lung Cancer 2018 Australian PEEK Study Section 8

90.00

80.00

70.00

60.00

50.00

40.00

30.00

20.00

10.00

0.00

Negative impact overall Emotional strain (Negative) Financial impact (Negative) Minimal impact at presentStrengthened relationships

Fatigue - not being able to work (Negative) New normal - pre and post cancer (Negative) Impact on future/plans, incl fertility (Negative)Negative impact of diagnosis/initial treatment Negative impact on family and friends (Negative)

Anxiety and can never escape the fact you have cancer (Negative)

Emotional and physicial impact on partner/carer, including intimacy (Negative) Not being able to do physical activities/impact on ability to do these activities with… Figure 8.1: Impact on quality of life

Regular activities to maintain mental heath brain metastases (31.82%) reported using physical exercise, more frequently than the general population The most common way that participants reported (18.75%), while those with other metastases reported managing their mental and emotional health was by this less frequently (8.33%). Participants with stage I or accessing a mental health professional such as a II lung cancer (5.88%) reported having a positive psychiatrist, psychologist or counsellor (n=35; 43.75%). outlook, less frequently than the general population There were 19 participants (23.75%) that described (16.25%), while those from regional and remote areas using coping strategies and 17 participants (21.25%) (26.67%) reported this more frequently. Participants that described using mindfulness or meditation. The from regional or remote areas (0.00%) reported having next most common themes included using physical family or friends who helped them manage their exercise to manage emotional impact (n=13; 16.25%), emotional health, less frequently than the general having a positive outlook (n=11; 13.75%) and having population (13.75%). family or friends who helped them manage their emotional health (n=11; 13.75%). Participant describes consulting a mental health professional to manage emotional impact In relation to sub-group variations, participants from (psychiatrist/psychologist/counsellor) regional or remote areas (20.00%) reported accessing a mental health professional, less frequently than the I then thought counselling and I saw a cancer general population (43.75%). Participants from counsellor. I managed that through talking and regional and remote areas (53.33%) described coping talking with reaching out. I really had to reach out at mechanisms that they used to manage their emotional that stage. I felt I needed to so I got very busy doing health, more frequently than the general population that so that to help my mental health. Participant 4 (23.75%). Participants that were younger (31.82%) described using mindfulness or meditation, more When I was first diagnosed and after my operation, I frequently than the general population (21.25%), while was allocated a doctor specialist in psychiatry, I those with more pain (9.38%) and older participants suppose. I used to go see her every week and discuss (8.33%), reported this less frequently. Participants with my feelings and how it affected me. I suppose she put 256 Lung Cancer 2018 Australian PEEK Study Section 8 me on the right path of how I should go about thinking uneasy. [INTERVIEWER: So you keep your mind active, about things, and having a lot of support around you busy?) I think so, people say…I watch quiz shows a lot is the key. Participant 30 and I'm one of these people that I absorb information...It’s just, I guess, that's always been the I don't think I mentioned before, I've been depressed way with me. I love mathematics and I loved in my life and I was on medication for that. I was information. I worked in the oil industry as a range seeing a counsellor, but I had actually decided I wasn't Engineer. I've always been a person that loved going to see him because I was feeling quite well and information and absorbed it readily. I think that's decided to decrease antidepressants. When I got the good for you. Participant 17 diagnosis, I had to decide I can see him again. So I see him fairly regularly, maybe once every month or so. I Yes, I work. [laughs] I'm never at home, I work. Yes, changed my antidepressants, and I see my GP fairly you need that focus. I think you need something other regularly. Participant 37 than just the dying shit. Participant 73

Yes, it affects my mental health greatly. It is living Participant describes using mindfulness or meditation 24/7 with this uncertainty of what's going to happen to manage emotional impact and when it's going to happen. It's a very difficult thing to live with and yes, I do get some help. I see a I would try doing mindfulness. I'm just not mindful hospital psychologist regularly every four weeks now. enough to do mindfulness. My mind's all over the Participant 59 place. Participant 11

Participant describes the coping strategies - centred One of the things I started doing is meditation and I around keeping an active mind and keeping busy - find that sort of helped me to try and move forward that they use to help manage the emotional impact rather than just not know where I am and thinking about the past and the future and not worry about Well, I play international scrabble on the computer. things here. Participant 35 It's important for me to get out in the garden and put my hands in the soil. I should have been one perhaps, I have taken up other hobbies as a result of getting I don't know, to connect with the earth or whatever lung cancer. I go to yoga and meditation Participant you'd like to say. Participant 6 50

I do. I do crosswords. I go online. I comment on Twitter I try and meditate. I try very much to just enjoy the and on Facebook. I research…my love is motor cars small things. There’s a lot of stuff I just refuse to let it and things like that. Overseas, I'd love to go overseas upset me anymore, it’s just not worth it, just let it go. again that probably never will, but I look at different I try and meditate. Participant 57 places so that I could visit. My days, I can feel I'm

Table 8.2: Regular activities to maintain mental health Activities to maintain mental health All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes consulting a mental health professional to manage emotional impact 35 43.75 8 47.06 7 41.18 20 43.48 15 44.12 (psychiatrist/psychologist/counsellor) Participant describes coping strategies they use to 19 23.75 5 29.41 4 23.53 10 21.74 9 26.47 help manage the emotional impact Participant describes using mindfulness or meditation to manage emotional impact 17 21.25 3 17.65 3 17.65 11 23.91 6 17.65 Participant describes using physical exercise to manage emotional impact 15 18.75 2 11.76 4 23.53 9 19.57 6 17.65 Participant describes how their positive outlook helps manage the emotional impact 13 16.25 1 5.88 4 23.53 8 17.39 5 14.71 Participant reports how their family or friends have helped them manage the emotional impact 11 13.75 1 5.88 2 11.76 8 17.39 3 8.82 Participant reports participating in support groups to help manage emotional impact 8 10.00 2 11.76 1 5.88 5 10.87 3 8.82 Participant describes how their outlook had changed due to their illness experience 8 10.00 1 5.88 2 11.76 5 10.87 3 8.82

257 Lung Cancer 2018 Australian PEEK Study Section 8 Table 8.2: Regular activities to maintain mental health (continued) Activities to maintain mental health All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes consulting a mental health professional to manage emotional 35 43.75 8 36.36 12 50.00 15 44.12 16 38.10 19 50.00 impact (psychiatrist/psychologist/counsellor) Participant describes coping strategies they use to help manage the emotional impact 19 23.75 6 27.27 4 16.67 9 26.47 10 23.81 9 23.68 Participant describes using mindfulness or meditation to manage emotional impact 17 21.25 6 27.27 5 20.83 6 17.65 12 28.57 5 13.16 Participant describes using physical exercise 15 18.75 7 31.82 2 8.33 6 17.65 9 21.43 6 15.79 to manage emotional impact Participant describes how their positive outlook helps manage the emotional impact 13 16.25 4 18.18 4 16.67 5 14.71 6 14.29 7 18.42 Participant reports how their family or friends have helped them manage the 11 13.75 3 13.64 5 20.83 3 8.82 7 16.67 4 10.53 emotional impact Participant reports participating in support groups to help manage emotional impact 8 10.00 1 4.55 4 16.67 3 8.82 7 16.67 1 2.63 Participant describes how their outlook had 8 10.00 3 13.64 2 8.33 3 8.82 6 14.29 2 5.26 changed due to their illness experience Activities to maintain mental health All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes consulting a mental health professional to manage emotional impact 35 43.75 21 43.75 14 43.75 15 41.67 20 45.45 (psychiatrist/psychologist/counsellor) Participant describes coping strategies they use to help manage the emotional impact 19 23.75 9 18.75 10 31.25 8 22.22 11 25.00 Participant describes using mindfulness or meditation to manage emotional impact 17 21.25 14 29.17 3 9.38 3 8.33 14 31.82 Participant describes using physical exercise to manage emotional impact 15 18.75 8 16.67 7 21.88 5 13.89 10 22.73 Participant describes how their positive outlook helps manage the emotional impact 13 16.25 9 18.75 4 12.50 5 13.89 8 18.18 Participant reports how their family or friends have helped them manage the emotional impact 11 13.75 8 16.67 3 9.38 4 11.11 7 15.91 Participant reports participating in support groups 8 10.00 6 12.50 2 6.25 4 11.11 4 9.09 to help manage emotional impact Participant describes how their outlook had 8 10.00 7 14.58 1 3.13 3 8.33 5 11.36 changed due to their illness experience

258 Lung Cancer 2018 Australian PEEK Study Section 8 Table 8.2: Regular activities to maintain mental health (continued) Activities to maintain mental All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low health remote school SEIFA n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes consulting a mental health professional to manage 35 43.75 32 49.23 3 20.00 17 42.50 18 45.00 25 50.00 10 33.33 emotional impact (psychiatrist/psychologist/counsellor) Participant describes coping strategies they use to help manage the emotional 19 23.75 11 16.92 8 53.33 11 27.50 8 20.00 8 16.00 11 36.67 impact Participant describes using mindfulness or meditation to manage emotional 17 21.25 15 23.08 2 13.33 5 12.50 12 30.00 14 28.00 3 10.00 impact Participant describes using physical exercise to manage emotional impact 15 18.75 11 16.92 4 26.67 5 12.50 10 25.00 7 14.00 8 26.67 Participant describes how their positive outlook helps manage the emotional 13 16.25 9 13.85 4 26.67 9 22.50 4 10.00 8 16.00 5 16.67 impact Participant reports how their family or friends have helped them manage the 11 13.75 11 16.92 0 0.00 5 12.50 6 15.00 9 18.00 2 6.67 emotional impact Participant reports participating in support groups to help manage 8 10.00 7 10.77 1 6.67 4 10.00 4 10.00 6 12.00 2 6.67 emotional impact Participant describes how their outlook had changed due to their illness 8 10.00 8 12.31 0 0.00 6 15.00 2 5.00 7 14.00 1 3.33 experience

50.00

45.00

40.00

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00

Family/friends Positive outlook Changed outlook

Coping tools/strategies

Mindfulness, meditation or yoga Physical activity (walking, gym, sport) Support groups (online/face-to-face) Seeing psychiatrist/psychologist/counsellor Figure 8.2: Regular activities to maintain mental health

259 Lung Cancer 2018 Australian PEEK Study Section 8 Regular activities to maintain health Participant reports importance of complying with the treatment regime The most common theme described by participants was being physically active (n=35; 43.71%) and this was Take my pills. [laughs] That's about it. I don't have any followed by the importance of complying with effects for my lung cancer. I've never had a physical treatment (n=24; 30.00%). There were 20 participants effect from my lung cancer before so I don't have to (25.00%) that described healthy diet and lifestyle, 13 do anything. I've been very fortunate. As long as I take participants (16.25%) that described the need to listen the medication I've been prescribed, all I had to do so to their body and rest when needed, and 11 far such would. Participant 19 participants (13.75%) that described pacing themselves and accepting help. I'm really lucky, I don't have to do anything at all. I'm very lucky. I just take my two tablets twice a day, In relation to sub-group variations, participants with that's as much as an inconvenience it's causing me stage I and II lung cancer (64.71%) described physical right now. Participant 42 activity, more frequently than the general population (43.75%), while those from regional or remote areas The only thing for me is to keep up the treatment. (26.67%) described this less frequently. Participants That's part of half a day or it's seven, about five or six with stage I and II lung cancer (5.88%) described hours by the time I drive there and back and all that complying with treatment, less frequently than the stuff. Once every three weeks, that's it. In my case, I general population (30.00%), while those with other think I'm extremely lucky. Participant 53 metastases (41.67%) reported this more frequently. Participants with stage III lung cancer (11.76%), those Participant reports benefits of a healthy diet/lifestyle with stage I to II lung cancer and no distant metastases (14.71%) and older participants (13.89%), described a You need to watch your diet, really. Make sure you do healthy diet and lifestyle less frequently than the a bit of exercise, just trying to get your lungs working. general population (25.00%), while those with brain If you just breathe, deep breathing is better than metastases (40.91%) reported this more frequently. nothing. Participant 5 Participants with stage I and II lung cancer (5.88%) described listening to their body, less frequently than I try to exercise at least three times a week because I the general population (16.35%). know that not only is that good for me mentally, but also physically in terms of outcomes for me that I think Participant reports benefits of being physically active that it does actually make the outcomes better, and just try to keep myself healthy in terms of eating well, What do I need to do? I need to keep moving. I swim although sometimes that's difficult, the cancer as much as I can. I do Pilates twice a week. I think it's diagnosis. Participant 37 more emotionally. Mentally, it's harder than physically because I'd accepted with the COPD. That I've always been a healthy eater, so I continue with a really changed physically what I could do. I realized healthy diet. I hardly eat much meat, I have a lot of now if I sit around and do nothing, I'll loose that lung fish and beans and things like that. I love the salads capacity even more. I'm very, very strong about doing and mainly fresh produce that I eat. Hardly any as much physical activity as I'm capable of. Participant processed food, so that my diet…I've probably 1 improved on my diet. I stopped drinking alcohol. I do have a couple of wine now and again, but I used to Exercise. That's what I need to do on a regular basis. drink a brandy everyday and I cut that out to nothing. That helps me to get through the day without feeling Yes the diet. The diet has changed for the better, even fatigue. I'd say that's the main thing. Participant 13 though I was still on a healthy diet. I couldn't The biggest thing holding me back a lot of the time is understand why with my past…I know I was an ex- just fatigue, which is building up. I rest. I just take it smoker, but I have always been very fit and eating easy. I do try to walk and I've found that, strangely healthily. I just couldn't understand why I would get enough, that even when I'm fatigued if I do walk, I cancer. It's just bad luck. Participant 65 don't feel more fatigued. Even though when I walk, I'm feeling really fatigued, it doesn't knock me about afterwards. It's a strange thing, so I do try to do walking to try and keep myself going. Participant 59

260 Lung Cancer 2018 Australian PEEK Study Section 8 Participant reports benefits of listening to your body been a runner, I can walk and I feel lucky about that and resting when needed whereas if I start I doing anything that involves shifting things and picking things up I just get totally I just have to be careful all the time, that's what's worn out. Participant 22 doing my head in. I'm not careful, I never have been, and there I have to be careful of my health and my Well now I just have to sleep. I still get so tired. When well being all the time. In a way that itself is I went away over Easter, I was really active over exhausting. I can't do the things that I want to do Easter but I'd just had the very good news about the every day. I have to, I get really tired actually I have lymph nodes being cleared. But I've just been so to go to sleep I just have to rest during the day and exhausted since. Participant 32 that's never really being part of my life. I used to work until I dropped, I used to run until I dropped, and then Okay. I always make sure I get a lot of sleep at night. I just can't now. Little things around the house that I try not to go out in the evenings. Participant 69 need doing I really have to pace it. Anything that involves lifting things, seems to wear me out, much more so than walking. I think because I've always

Table 8.3: Regular activities to maintain health Regular activities to maintain health All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant reports benefits of being physically active 35 43.75 11 64.71 6 35.29 18 39.13 17 50.00 Participant reports importance of complying with the treatment regime 24 30.00 1 5.88 6 35.29 17 36.96 7 20.59 Participant reports benefits of a healthy 20 25.00 3 17.65 2 11.76 15 32.61 5 14.71 diet/lifestyle Participant reports benefits of listening to your 13 16.25 1 5.88 3 17.65 9 19.57 4 11.76 body and resting when needed Participant reports benefits of pacing their activity, and letting others help them 11 13.75 3 17.65 3 17.65 5 10.87 6 17.65 Participant reports benefits of 8 10.00 0 0.00 3 17.65 5 10.87 3 8.82 meditation/mindfulness

Regular activities to maintain health All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant reports benefits of being physically active 35 43.75 9 40.91 9 37.50 17 50.00 20 47.62 15 39.47 Participant reports importance of complying with the treatment regime 24 30.00 7 31.82 10 41.67 7 20.59 11 26.19 13 34.21 Participant reports benefits of a healthy 20 25.00 9 40.91 6 25.00 5 14.71 12 28.57 8 21.05 diet/lifestyle Participant reports benefits of listening to 13 16.25 5 22.73 4 16.67 4 11.76 4 9.52 9 23.68 your body and resting when needed Participant reports benefits of pacing their activity, and letting others help them 11 13.75 3 13.64 2 8.33 6 17.65 7 16.67 4 10.53 Participant reports benefits of 8 10.00 2 9.09 3 12.50 3 8.82 4 9.52 4 10.53 meditation/mindfulness

261 Lung Cancer 2018 Australian PEEK Study Section 8 Table 8.3: Regular activities to maintain health (continued) Regular activities to maintain health All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant reports benefits of being physically active 35 43.75 21 43.75 14 43.75 16 44.44 19 43.18 Participant reports importance of complying with the treatment regime 24 30.00 17 35.42 7 21.88 9 25.00 15 34.09 Participant reports benefits of a healthy 20 25.00 12 25.00 8 25.00 5 13.89 15 34.09 diet/lifestyle Participant reports benefits of listening to your 13 16.25 8 16.67 5 15.63 5 13.89 8 18.18 body and resting when needed Participant reports benefits of pacing their activity, and letting others help them 11 13.75 7 14.58 4 12.50 7 19.44 4 9.09 Participant reports benefits of 8 10.00 4 8.33 4 12.50 1 2.78 7 15.91 meditation/mindfulness Regular activities to maintain All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low health remote school SEIFA n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant reports benefits of being physically active 35 43.75 31 47.69 4 26.67 15 37.50 20 50.00 24 48.00 11 36.67 Participant reports importance of complying with the treatment regime 24 30.00 19 29.23 5 33.33 10 25.00 14 35.00 17 34.00 7 23.33 Participant reports benefits of a 20 25.00 17 26.15 3 20.00 7 17.50 13 32.50 10 20.00 10 33.33 healthy diet/lifestyle Participant reports benefits of listening 13 16.25 11 16.92 2 13.33 5 12.50 8 20.00 9 18.00 4 13.33 to your body and resting when needed Participant reports benefits of pacing their activity, and letting others help 11 13.75 9 13.85 2 13.33 7 17.50 4 10.00 6 12.00 5 16.67 them Participant reports benefits of 8 10.00 7 10.77 1 6.67 3 7.50 5 12.50 6 12.00 2 6.67 meditation/mindfulness

50.00

45.00

40.00

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00 Physical activity (walking, Take pills/medication Healthy diet/lifestyle Rest when needed Pace activity/ let others Meditation/mindfulness Know limits gym, sport) help Figure 8.3: Regular activities to maintain health

262 Lung Cancer 2018 Australian PEEK Study Section 8 Impact on relationships Yes, but for the better. It wakes everybody up, not just myself. I'm most likely going to be the first one to go, The most common theme described by participants "We should really enjoy each other's company while was a positive effect on relationships where I'm still around.” Participant 42 relationships were strengthened (n=41; 51.25%). This was however followed by negative effect on Family and friends, it has really brought the people relationship with family and/or friends as it is hard for that have friends much closer that I would never have others to understand and navigate a different type of thought of, that love me and, I don’t know. It brought relationship (n=20; 25.00%) and friends 'dropping people closer. It’s brought a greater understanding of away’ (n=17; 21.25%). There were 15 participants those people that think about me and I would never (18.75%) that described the way they relate to others have thought about. Family, we are very close as a had changed, and 15 participants (18.75%) that family anyway. Participant 61 described no effect on relationships. Participant describes negative effect on relationship In relation to sub-group variations, participants with with family and/or friends as it is hard for others to stage I to III lung cancer and those with no distant understand and navigate a different type of metastases (35.29%), and those from regional or relationship remote areas (40.00%) described relationships being strengthened, less frequently than the general Yes. As soon as you say lung cancer, is that from your population (51.25%), while those with stage IV lung smoking? A lot of people are scared, they don't know cancer (63.04%) and those with other metastases what to say in case they say the wrong thing. I hope (79.17%) reported this more frequently. Participants I'm not going overboard with all my babble. with stage I to III lung cancer and those with no distant Participant 8 metastases (35.39%), and those from mid to low SEIFA areas (36.67%) described challenges navigating a Just people I don't spend a lot of time with they just different type of relationship, more frequently than the don't get it. Some people like I said, just don't get it general population (25.00%), while those with brain and I don't know whether they don't believe or not. metastases (35.29%) reported this less frequently. Participant 16 Participants with brain metastases (9.09%) reported friends ‘dropping away’, less frequently than the Definitely. It's very hard to navigate with friends, how general population (21.25%). Participants with stage III much you tell them because everyone reacts lung cancer (5.88%) described no effect on completely differently. Some people are supportive, relationships, less frequently than the general some people want to watch you. I found that I limit population (18.75%). what I tell people. I think I will change that because I want to do some fundraising for lung cancer. I'll have Participant describes positive effect on relationship to change that, but as soon as you tell people that with family and/or friends: Relationships you're stage four and it's in your brain and your bones, strengthened they write you off basically.' You try not to give them too much information, I suppose. As far as my family As for with family it's just that my family and I, we're goes, it probably improved my relationship with my extremely close, supportive. We've been through it husband and my kids as well really because we all before. We know how to stick together, support each realised that we're not going to waste any more time, other. I'd say one of my sisters…I have two sisters and and the little things are important. Certainly, it affects one brother. If I look at all of them individually, I can all your friendship phases. Participant 49 see how my diagnosis has impacted them but collectively we are all quite strong. Participant 13 Participant describes negative effect on relationship with family and/or friends as it is hard for others to Yes. I think it's both put strain on them at times. It's understand and navigate a different type of also enriched them I think. I now have grandchildren, relationship I didn't have any when I got diagnosed. I didn't think I'd ever see grandchildren. Yet there's three little boys Its definitely impacted on my parents a lot because I'm now. They're the love of my life in so many ways. one of five, one of five girls. I'm in the middle, and We're going to pick-up one today and go and buy him every time it's my birthday or there's anything to do an ice cream after preschool. Participant 39 with me, mom and dad, everybody, just drops everything ,and it's always like that. Now, sometimes 263 Lung Cancer 2018 Australian PEEK Study Section 8 it might be something relatively minor, like I might Other people who you would've expected to be in your have a bit of a cold, and everybody's all freaking out life absolutely disappeared or became pretty non- because I have a cold... Sometimes I feel that burden helpful. Participant 14 of why is everyone worrying about me? I'm fine right now. That's impacted. Just that feeling of that they A little, some of them, yes, because they don't know have, I think, of worrying about me all the time. That how to cope with. They don't know how to be around impacts on how I interact with everybody, I think. you. They don't know what to say, so some of them Participant 69 pulled away a little bit. That's just in their personality. Participant 31 Participant describes friends 'dropping away’ Certainly. I had one friend who couldn't handle it and Yes. It gives you more of an idea of who…People say just stopped returning my calls. He explained to me that they are there for you or whatever luck. Then prior to that, that he had a couple of people pass away when the axe is to the grind, you do get to see who is in that year and he was struggling with it. Deal with there for you and who isn’t. Participant 5 the fact that I might as well. Then that's it. I just never heard from him again and he didn't return my calls. Yes, it has. Some people disappear, some people…you That's one instance. Participant 68 didn't expect that to step up, which was really nice.

Table 8.4: Impact on relationships Impact on relationships All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes positive effect on relationship with family and/or friends: 41 51.25 5 29.41 7 41.18 29 63.04 12 35.29 Relationships strengthened Participant describes negative effect on relationship with family and/or friends as it is 20 25.00 8 47.06 4 23.53 8 17.39 12 35.29 hard for others to understand and navigate a different type of relationship Participant describes friends 'dropping away' 17 21.25 5 29.41 4 23.53 8 17.39 9 26.47 Participant describes effect on way they relate to others/change in behaviour 15 18.75 3 17.65 4 23.53 8 17.39 7 20.59 Participant describes no effect on relationships with family or friends 15 18.75 3 17.65 1 5.88 11 23.91 4 11.76 Participant describes negative effect on relationship with partner: Additional 9 11.25 2 11.76 3 17.65 4 8.70 5 14.71 pressure/stress Impact on relationships All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes positive effect on relationship with family and/or friends: 41 51.25 10 45.45 19 79.17 12 35.29 20 47.62 21 55.26 Relationships strengthened Participant describes negative effect on relationship with family and/or friends as it 20 25.00 3 13.64 5 20.83 12 35.29 11 26.19 9 23.68 is hard for others to understand and navigate a different type of relationship Participant describes friends 'dropping away' 17 21.25 2 9.09 6 25.00 9 26.47 11 26.19 6 15.79 Participant describes effect on way they relate to others/change in behaviour 15 18.75 4 18.18 4 16.67 7 20.59 9 21.43 6 15.79 Participant describes no effect on relationships with family or friends 15 18.75 6 27.27 5 20.83 4 11.76 7 16.67 8 21.05 Participant describes negative effect on relationship with partner: Additional 9 11.25 2 9.09 2 8.33 5 14.71 5 11.90 4 10.53 pressure/stress

264 Lung Cancer 2018 Australian PEEK Study Section 8 Table 8.4: Impact on relationships (continued) Impact on relationships All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes positive effect on relationship with family and/or friends: 41 51.25 22 45.83 19 59.38 16 44.44 25 56.82 Relationships strengthened Participant describes negative effect on relationship with family and/or friends as it is 20 25.00 11 22.92 9 28.13 9 25.00 11 25.00 hard for others to understand and navigate a different type of relationship Participant describes friends 'dropping away' 17 21.25 10 20.83 7 21.88 8 22.22 9 20.45 Participant describes effect on way they relate to others/change in behaviour 15 18.75 10 20.83 5 15.63 5 13.89 10 22.73 Participant describes no effect on relationships with family or friends 15 18.75 10 20.83 5 15.63 7 19.44 8 18.18 Participant describes negative effect on relationship with partner: Additional 9 11.25 5 10.42 4 12.50 2 5.56 7 15.91 pressure/stress

Impact on relationships All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes positive effect on relationship with family and/or friends: 41 51.25 35 53.85 6 40.00 17 42.50 24 60.00 26 52.00 15 50.00 Relationships strengthened Participant describes negative effect on relationship with family and/or friends as it is hard for others to 20 25.00 16 24.62 4 26.67 12 30.00 8 20.00 9 18.00 11 36.67 understand and navigate a different type of relationship Participant describes friends 'dropping away' 17 21.25 14 21.54 3 20.00 11 27.50 6 15.00 10 20.00 7 23.33 Participant describes effect on way they relate to others/change in 15 18.75 12 18.46 3 20.00 4 10.00 11 27.50 12 24.00 3 10.00 behaviour Participant describes no effect on relationships with family or friends 15 18.75 14 21.54 1 6.67 11 27.50 4 10.00 10 20.00 5 16.67 Participant describes negative effect on relationship with partner: 9 11.25 6 9.23 3 20.00 1 2.50 8 20.00 7 14.00 2 6.67 Additional pressure/stress

265 Lung Cancer 2018 Australian PEEK Study Section 8

60.00

50.00

40.00

30.00

20.00

10.00

0.00 Family and/or friends - Family and/or friends - Friends dropped away, or Self/behaviour Family and/or friends - no Partner - negative positive overall negative have been dropped change Figure 8.4: Impact on relationships

Burden on family less pain (14.58%) reported this less frequently. Participants with stage III lung cancer (35.29%) Participants were also asked if their condition caused reported their condition being a burden due to the any additional burden on their family. The most mental/emotional strain it places on their family, more common theme was there was an additional burden on frequently than the general population (22.50%), while family (n=60; 75.00%). Within this theme there were 20 those with brain metastases (9.09%) reported this less participants (25.00%) that felt this was due to the extra frequently. Participants with stage III lung cancer duties or responsibilities their family members have (17.65%) reported their condition being a burden due had to take on, and 18 participants (22.50%) that felt to financial strain of treatment or inability to work, this was due to the mental/emotional strain it places more frequently than the general population (7.50%). on their family. Participant feels that their condition is not a burden There were 20 participants (25.00%) that did not feel on their family at this stage, but likely to be in the as though their condition was a burden on their family. future This included 7 participants (8.75%) that thought it may be a burden in the future and six participants (7.50%) I definitely worry about that in the future. I worry my that did not require a lot of assistance. mom really wants to do everything to help me. When I was having chemo and radiation she wanted to take In relation to sub-group variations, participants with me to the...I do worry that in the future if they have stage III lung cancer (5.88%) described their condition to care for me at home that it would be a burden so I not being a burden, less frequently than the general would be better not home. Participant 37 population (25.00%). Participants with stage III lung cancer (94.12%) and those with more pain (87.50%), Whilst I'm well, not much burden and it's fine. There's reported their condition being a burden more definitely an extra level of care that's supposed to frequently than the general population (75.00%). calm me, for sure. Yes, definitely, they really look out Participants with stage III lung cancer (41.18%), those for me and are there for me. I'm sure that doesn't have with more pain (40.63%) and those from regional or an extra burden to them for sure. Participant 62 rural areas (46.67%) reported their condition being a burden due to the extra duties or responsibilities their I don't, not at the moment. But it will be in the future. family members have had to take on, more frequently But none of my immediate family live in LOCATION, than the general population (25.00%), while those with which is where I live. Participant 78 266 Lung Cancer 2018 Australian PEEK Study Section 8

Participant feels that their condition is a burden on Participant feels that their condition is a burden on their family due to the extra duties or responsibilities their family due to the mental/emotional strain it their family members have had to take on places on their family

Of course, I do. Just taking up their time for something Yes, I do, yes. It's probably more mentally than they could be doing something else. I've run my race. physically because somebody always comes with me I've had a great life and I'm making their lives difficult to my doctor's appointments and my CTs and my by demanding…I try not to demand any of their time MRIs. They don't have to, but they like to. Mum and but at times I just can't do anything about it, so I try dad are always there for them because my husband and keep it to a minimum. Participant 17 can't always come to the appointments. That's a lot more work for them as well. Participant 18 Yes, basically I'm reliant on my wife to make my meals and for showering, bathing and clothing. Participant Yes, it's a worry for them because obviously I've got 35 two boys and they worry about me all the time. It's a part of their life now too, the same with my husband. Yes, I feel that my husband takes on the…care as well. We try and be as normal as possible, but you have one He makes sure I get to my appointments on time, he's setback and then everyone goes into panic mode my driver and helper, he's always done a lot of because of what's happening, "Is she going to be all household tasks so that hasn't been an issue. right." It does affect everybody. Participant 31 Sometimes I think that we'd be doing a lot more in our retirement if I hadn't got lung cancer so I feel that I'm I think more it's the worry on their part. I think that's a bit more of a burden there. Participant 47 a bit of a burden, the emotional burden. Participant 53 It has been because I've been going to LOCATION every three weeks since 2016, the middle of it. My I think it definitely took its toll psychologically on all wife has been on all of those trips until this year, the of us. Last year was a very hard year, and I suspect as non-scan trips where I just have blood tests and a things progress it will become very difficult again. doctor's appointment. The kids have come one each Participant 57 and a couple of my mates have come on trips. It's a burden but everybody trying to get it into their schedule and it wasn't there when they started the year. A bit of a burden. Participant 77

267 Lung Cancer 2018 Australian PEEK Study Section 8 Table 8.5: Burden on family Burden on family All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant does not feel that their condition is a burden on their family 20 25.00 5 29.41 1 5.88 14 30.43 6 17.65 Participant feels that their condition is not a burden on their family at this stage, but likely to 7 8.75 2 11.76 0 0.00 5 10.87 2 5.88 be in the future Participant feels that their condition is not a burden on their family as they've required little 6 7.50 2 11.76 1 5.88 3 6.52 3 8.82 assistance Participant feels that their condition is a burden on their family 60 75.00 12 70.59 16 94.12 32 69.57 28 82.35 Participant feels that their condition is a burden on their family due to the extra duties or responsibilities their family members have had to 20 25.00 3 17.65 7 41.18 10 21.74 10 29.41 take on Participant feels that their condition is a burden on their family due to the mental/emotional 18 22.50 2 11.76 6 35.29 10 21.74 8 23.53 strain it places on their family Participant feels that their condition was a burden on their family during the early stages of 8 10.00 3 17.65 1 5.88 4 8.70 4 11.76 diagnosis/treatment Participant feels that their condition is a burden on their family due to financial strain treatment or 6 7.50 0 0.00 3 17.65 3 6.52 3 8.82 inability to work has placed on their family Participant feels that their condition is a burden on their family due to the need to have others 5 6.25 2 11.76 0 0.00 3 6.52 2 5.88 drive them around

Burden on family All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant does not feel that their condition is a burden on their family 20 25.00 6 27.27 8 33.33 6 17.65 13 30.95 7 18.42 Participant feels that their condition is not a burden on their family at this stage, but 7 8.75 2 9.09 3 12.50 2 5.88 2 4.76 5 13.16 likely to be in the future Participant feels that their condition is not a burden on their family as they've required 6 7.50 2 9.09 1 4.17 3 8.82 6 14.29 0 0.00 little assistance Participant feels that their condition is a burden on their family 60 75.00 16 72.73 16 66.67 28 82.35 29 69.05 31 81.58 Participant feels that their condition is a burden on their family due to the extra duties or responsibilities their family 20 25.00 6 27.27 4 16.67 10 29.41 7 16.67 13 34.21 members have had to take on Participant feels that their condition is a burden on their family due to the 18 22.50 2 9.09 8 33.33 8 23.53 10 23.81 8 21.05 mental/emotional strain it places on their family Participant feels that their condition was a burden on their family during the early 8 10.00 2 9.09 2 8.33 4 11.76 4 9.52 4 10.53 stages of diagnosis/treatment Participant feels that their condition is a burden on their family due to financial 6 7.50 1 4.55 2 8.33 3 8.82 6 14.29 0 0.00 strain treatment or inability to work has placed on their family Participant feels that their condition is a burden on their family due to the need to 5 6.25 3 13.64 0 0.00 2 5.88 1 2.38 4 10.53 have others drive them around

268 Lung Cancer 2018 Australian PEEK Study Section 8 Table 8.5: Burden on family (continued) Burden on family All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant does not feel that their condition is a burden on their family 20 25.00 16 33.33 4 12.50 9 25.00 11 25.00 Participant feels that their condition is not a burden on their family at this stage, but likely to 7 8.75 5 10.42 2 6.25 3 8.33 4 9.09 be in the future Participant feels that their condition is not a burden on their family as they've required little 6 7.50 6 12.50 0 0.00 4 11.11 2 4.55 assistance Participant feels that their condition is a burden on their family 60 75.00 32 66.67 28 87.50 27 75.00 33 75.00 Participant feels that their condition is a burden on their family due to the extra duties or responsibilities their family members have had to 20 25.00 7 14.58 13 40.63 8 22.22 12 27.27 take on Participant feels that their condition is a burden on their family due to the mental/emotional 18 22.50 11 22.92 7 21.88 8 22.22 10 22.73 strain it places on their family Participant feels that their condition was a burden on their family during the early stages of 8 10.00 7 14.58 1 3.13 3 8.33 5 11.36 diagnosis/treatment Participant feels that their condition is a burden on their family due to financial strain treatment or 6 7.50 5 10.42 1 3.13 1 2.78 5 11.36 inability to work has placed on their family Participant feels that their condition is a burden on their family due to the need to have others 5 6.25 4 8.33 1 3.13 3 8.33 2 4.55 drive them around

Burden on family All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant does not feel that their condition is a burden on their family 20 25.00 16 24.62 4 26.67 9 22.50 11 27.50 13 26.00 7 23.33 Participant feels that their condition is not a burden on their family at this 7 8.75 7 10.77 0 0.00 4 10.00 3 7.50 4 8.00 3 10.00 stage, but likely to be in the future Participant feels that their condition is not a burden on their family as they've 6 7.50 5 7.69 1 6.67 2 5.00 4 10.00 5 10.00 1 3.33 required little assistance Participant feels that their condition is a burden on their family 60 75.00 49 75.38 11 73.33 31 77.50 29 72.50 37 74.00 23 76.67 Participant feels that their condition is a burden on their family due to the extra duties or responsibilities their 20 25.00 13 20.00 7 46.67 10 25.00 10 25.00 10 20.00 10 33.33 family members have had to take on Participant feels that their condition is a burden on their family due to the 18 22.50 16 24.62 2 13.33 8 20.00 10 25.00 11 22.00 7 23.33 mental/emotional strain it places on their family Participant feels that their condition was a burden on their family during 8 10.00 6 9.23 2 13.33 3 7.50 5 12.50 6 12.00 2 6.67 the early stages of diagnosis/treatment Participant feels that their condition is a burden on their family due to 6 7.50 4 6.15 2 13.33 3 7.50 3 7.50 5 10.00 1 3.33 financial strain treatment or inability to work has placed on their family Participant feels that their condition is a burden on their family due to the 5 6.25 5 7.69 0 0.00 3 7.50 2 5.00 4 8.00 1 3.33 need to have others drive them around

269 Lung Cancer 2018 Australian PEEK Study Section 8

80.00

70.00

60.00

50.00

40.00

30.00

20.00

10.00

0.00 No burden No burden at this stage No burden, as minimal Yes, burden on family Yes, mental/emotional Yes, extra Yes, during early stages Yes, financial Yes, or no help needed strain duties/responsibilities of treatment driving/transportation Figure 8.5: Burden on family

270 Lung Cancer 2018 Australian PEEK Study Section 8 Experience of anxiety related to disease progression from 1 to 10, a higher score denotes a higher level of advantage. Those with a higher SEIFA score of 7-10 The Fear of Progression questionnaire measures the (n=50, 62.50%) compared to those with a mid to low level of anxiety people experience in relation to their SEIFA score of 1-6 (n=30, 37.50%). conditions. The Fear of Progression questionnaire comprises a total score, with a higher score denoting A one-way ANOVA test was used with the assumptions increased anxiety. Summary statistics for the entire for response variable residuals were normally cohort are displayed alongside the possible range of distributed and variances of populations were equal for the scale in Table 8.4. Overall the entire cohort had a comparisons of lung cancer stage, and brain mean total score of 37.00 (SD = 9.21), which is a score metastases (Table 8.6). Summary statistics are listed in in the middle of the scale. Table 8.5 for lung cancer stage and brain metastases.

The Fear of Progression Total score is displayed by All other comparisons were made by a two-sample t- subgroups (Figures 8.5 to 8.13). The stage of disease test was used when assumptions for normality and was described as those with early or stage I or II disease variance were met (Table 8.7), or when assumptions (n=17, 21.25%), those with invasive or stage III disease for normality and variance were not met, a Wilcoxon (n=17.00, 21.25%), and those with advanced or stage rank sum test with continuity correction was used IV disease (n=46, 57.50%). Distant metastases was (Table 8.8). described as those that had disease with distant metastases (excluding those with spread to lymph A two sample t-test indicated that the mean score for nodes only) (n=46, 57.50%) compared to those without the fear of progression total score [t(78) = 2.11, distant metastases (n=34, 42.50%). Those with brain p=0.0383] was significantly worse for those with No metastases (n=22, 27.50%) were compared to those distant metastases (Mean = 39.47, SD= 9.88) compared with other distant metastases (excluding those with to those with distant metastases (Mean = 35.17 SD = spread to lymph nodes only) (n=24, 30.00 %), and those 8.32); and the two sample t test indicated the mean without distant metastases (n=34, 42.50%). The Short score for the fear of progression total score [t(78) = - Form Health Survey 36 (SF36) measures baseline 2.59, p=0.0114] was significantly better for those with health, or the general health of an individual. Two of less pain (Mean = 34.90, SD= 9.40) compared to those the nine subscales have been used in the subgroup with more pain (Mean = 40.16 SD = 8.05). analysis, energy/fatigue, those with a higher than average score for the cohort in the SF36 energy/fatigue Participants with no distant metastases had a mean scale (n=42, 52.50%) compared to those with an score for the “Fear of progression total score” that average or less score (n=38, 47.50%); pain, those that was statistically significantly higher than those with scored above average for the cohort in the SF36 Pain distant metastases. However, both scores were in scale (n=48, 60.00%) compared to those that scored the middle of the scale indicating moderate anxiety. average or below (n=32, 40.00%). Participants with more pain had a mean score for The gender of participants, females (n=66, 82.50%) the “Fear of progression total score” that was were compared with males (n=14, 17.50%). The age of statistically significantly higher than those with less the participants, those that were 55 and older (n=36, pain However, both scores were in the middle of 45.00%) were compared with those that were aged the scale indicating moderate anxiety. between 18 and 54 (n=44, 55.00%). The location of participants was evaluated by postcode using the Australian Statistical Geography Maps (ASGS) In addition to the fear of progression questionnaire, Remoteness areas accessed from DoctorConnect participants were asked if they become anxious if they (doctorconnect.gov.au), those living in a metropolitan did not experience side effects of treatment as it makes area (n=65, 81.25%) were compared to those living in them feel that the treatment is not working. The regional/rural areas (n= 15, 18.75%). Comparisons participants responded “never” (n=32, 40.00%), were made by education status, those with university “seldom” (n=11, 13.75%), “sometimes” (n=22, degree (n= 40, 50.00%) and those with high school or 27.50%), “often” (n=12, 15.00%) and “very often” (n=3, trade (n=40, 50.00%); and by Socio-economic Indexes 3.75%). for Areas (SEIFA) (www.abs.gov.au), SEIFA scores range

Lung Cancer 2018 Australian PEEK Study 271 Section 8 Table 8.6: Fear of Progression Total Score summary statistics

Mean SD Median IQR Possible range Quintile

FOPTS* 37.00 9.21 37.00 42.25 12 to 60 3.00 *Normal distribution, use Mean and SD as a central measure

Table 8.7: Summary statistics for lung cancer stage, and brain metastases

Group Subgroup Mean SD Median IQR

Stages I and II 39.76 9.78 41.00 14.00 Lung cancer stage Stage III 39.18 10.27 38.00 9.00 Stage IV 35.17 8.32 34.50 8.00 Brain metastases 34.32 8.53 33.00 6.25 Brain metastases Other distant metastases 35.96 8.23 36.50 9.00 No distant metastases 39.47 9.88 41.00 11.75

Table 8.8: Fear of progression total score one-way ANOVA table Sum of Mean FOPTS by group dF F p squares Square Between groups 364.00 2 181.93 2.21 0.1160 Lung cancer stage Within groups 6334.00 77 82.26 Total score 6694.00 79 Between groups 392.00 2 195.90 2.39 0.0982 Brain metastases Within groups 6303.00 77 81.90 Total score 6695.00 79

Table 8.9: Fear of progression total score two sample t test

Group Subgroup Mean SD t dF P

No distant metastases 39.47 9.88 2.11 78 0.0383* Distant metastases Distant metastases 35.17 8.32 Less pain 34.90 9.40 -2.59 78 0.0114* Pain More pain 40.16 8.05 Female 37.32 9.32 0.67 78 0.5056 Gender Male 35.50 8.82 Older (55 and older) 36.33 9.85 -0.58 78 0.5614 Age Younger (18 to 24) 37.55 8.72 Metropolitan 37.09 9.25 0.19 78 0.8533 Location Regional or remote 36.60 9.34 Trade or high school 38.15 9.75 1.12 78 0.2666 Education University 35.85 8.60 High SEIFA 36.38 9.46 -0.78 78 0.4404 SEIFA Mid - Low SEIFA 38.03 8.84

272 Lung Cancer 2018 Australian PEEK Study Section 8 Table 8.10: Fear of progression total score Wilcoxon test with continuity correction

Group Subgroup Median IQR W p

Better energy/fatigue 34.00 13.75 631.00 0.1083 Energy/Fatigue Worse energy/fatigue 38.00 8.75

Fear of progression by stage Fear of progression by distant metastases 60 60 50 50 40 40 30 30 20 20

Stage I and II Stage III Stage IV No Yes

Figure 8.6: Boxplot of FOPTS by lung cancer stage Figure 8.7: Boxplot of of FOPTS by distant metastases

Fear of progression by brain metastases Fear of progression by energy/fatigue 60 60 50 50 40 40 30 30 20 20

Brain mets Other distant mets No distant mets Better energy/fatigue Worse energy/fatigue

Figure 8.8: Boxplot of FOPTS by brain metastases Figure 8.9: Boxplot of FOPTS by energy/fatigue

Fear of progression by pain Fear of progression by gender 60 60 50 50 40 40 30 30 20 20

Less pain More pain Female Male

Figure 8.10: Boxplot of FOPTS by pain Figure 8.11 Boxplot of of FOPTS by gender

273 Lung Cancer 2018 Australian PEEK Study Section 8

Fear of progression by age Fear of progression by location 60 60 50 50 40 40 30 30 20 20

Older Younger Metropolitan Regional or remote

Figure 8.12: Boxplot of FOPTS by age Figure 8.13: Boxplot of FOPTS by location

Fear of progression by education Fear of progression by SEIFA 60 60 50 50 40 40 30 30 20 20

Trade or high school University High EIFA Mid- Low SEIFA

Figure 8.14: Boxplot of FOPTS by education Figure 8.15: Boxplot of FOPTS by SEIFA

274 Lung Cancer 2018 Australian PEEK Study Section 9 Section 9 Expectations and messages

Lung Cancer 2018 Australian PEEK Study Section 9

276 Lung Cancer 2018 Australian PEEK Study Section 9 Symptoms/aspects of quality of life important for treatments

Values that are important to patients when making decisions

Values that are important to patients when others are making decisions on their behalf

277 Lung Cancer 2018 Australian PEEK Study Section 9

Expectations of future treatment Cost. Cost is the big thing because the whole thing is layering the treatments. I looked at this one I wanted to layer on top of what I'm having to start the The most common theme was the importance of resistance and we probably could have afforded it at affordability of treatment, particularly in relation to first but they're saying I can't have it. The whole cost, equitable access (n=43; 53.75%), and this was followed the whole…you can't access it first line because the by recommendations for more targeted therapies, cost is prohibitive and yet in respect that they can particularly to reduce impact of side effects (n=19; access at this time. Participant 67 23.75%). There were 11 participants that recommended more investment in research to advance treatments in lung cancer (n=11; 13.75%). Okay. Well, costs…I've never had to because I've In relation to sub-group variations, participants with always had compassionate use or I'm now elected to stage I to II lung cancer and those with no distant do this now on the PBS. I haven't had to actually pay metastases (35.29%), those with more pain (40.63%), a lot of money, but I know people that have, that have those from regional or remote areas (33.33%) and had to fork out significant amounts of money for those from mid to low SEIFA areas (43.33%), noted the treatment. I really dislike that concept when I think importance of affordability of treatment, particularly in people in other developed countries have a much relation to equitable access, less frequently than the faster process of getting some of their medications general population (53.75%), while those with stage IV onto their public availability scheme. That's a big issue lung cancer (67.39%) and those with brain metastases for me, and research into lung cancer in Australia is (72.73%), described this more frequently. Participants pretty poor in terms of the financing of it. Participant with stage I and II lung cancer (11.76%) and those with 69 a trade or high school education (12.50%), recommended more targeted therapies, particularly to Participant recommends more targeted therapies, reduce impact of side effects, less frequently than the particularly to reduce impact of side effects and how general population (23.75%), while those with a treatments are administered university degree (35.00%) described this more often.Participants with worse fatigue (2.63%) recommended more investment in research to I think first, the way they are administered, like I'm advance treatments in lung cancer, less frequently lucky because I take the tablets and I've never had than the general population (53.75%). chemotherapy or radiation. I have friends who have had cancer and they've been really knocked around by the chemo and the radiation, really good. If there was Participant notes the importance of affordability of a way to improve that type of treatment, so that their treatment, particularly in relation to equitable access quality of life wouldn't be as bad. As I said, I consider myself very lucky that I just take the medicine. Probably the cost is the biggest challenge to lung Participant 9 cancer. With new therapies or new treatments, it takes a long time to actually become available, is able From new treatments I guess if there were some to be affordable for patients. The government and all treatments that had a lot less side-effects in these other, I don't know what they're called but comparison to chemo. Chemo is awful so if there was they're the ones who lobby for it to become available something that had no side effects or very little, then to be PBS funded so that patients can access those it'd be great. The thing is I get what side effect is, medications so live and not just…To be able to survive everybody can put at the side effect if the medication but to actually live. I guess the medication to get to is effective. Participant 23 the PBS funding stage faster…My doctor had to fight for it to get me the access so yes…I'm very lucky. That's what I mean with the way the things are at the I think as far as how they're administered, I think moment but anyway, we're still lucky. I'm still lucky. anything that you're able to do safely in your home, I'm still grateful. Participant 36 like the tablets I'm taking now I mean one tablet a day. I can do that easily, and I think 99% of people can do that easily. That treatment regimen is far superior

278 Lung Cancer 2018 Australian PEEK Study Section 9 in my opinion to having a port and having being thought to a different treatment that's worked for hooked up into the IV infusion, for however many another cancer. Participant 20 hours a day. The radiation that we've talked about with the radiation oncologist who's going to be ... Her targeted one treatment would take being in the It's just funding from research. You look at breast hospital for the whole day but the treatment would cancer and the amount of funding they put into that only take an hour. That kind of thing I think would be in the last 20 years and how it's decreased the amazing. Participant 78 mortality rate by so much. They can put funding into these other lesser known--Lung cancer has a huge amount of deaths in Australia. It's one of the highest Participant recommends more investment in research rates of death and it's a difficult time. I will repeat to advance treatments in lung cancer this. A lot of different causes or different types of lung cancer, but if they put the funding that they've put in breast cancer into lung cancer or other lesser known Some new treatments? Most of the treatments for cancers, I'm sure the outcomes would be just as good. lung cancers have been trialled because they've been Really, it's funding for research. Participant 56 actually found for different type of cancer. You get them second-hand. [chuckles] The treatment I'm on was for melanoma. They might try, it might work. I would like to see more research if they can get to the Because there's no research, really, done on lung point where these drugs hold the cancer in check. I'd cancer. You get that treatment second-hand because like to see the next step where they look at treatment it's worked on another cancer. I suppose from a around a cure. Something that gives you a bit more research point of view, there was more research done life expectancy. Participant 77 on actual lung cancer then it just being like a second Table 9.1: Expectations of future treatment

Expectations of future treatment All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant notes the importance of affordability of treatment, particularly in relation to equitable 43 53.75 7 41.18 5 29.41 31 67.39 12 35.29 access Participant recommends more targeted therapies, particularly to reduce impact of side effects and 19 23.75 2 11.76 5 29.41 12 26.09 7 20.59 how treatments are administered Participant recommends more investment in research to advance treatments in lung cancer 11 13.75 2 11.76 3 17.65 6 13.04 5 14.71 Participant describes preferring oral treatment at home 8 10.00 3 17.65 2 11.76 3 6.52 5 14.71

Expectations of future treatment All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant notes the importance of affordability of treatment, particularly in 43 53.75 16 72.73 15 62.50 12 35.29 23 54.76 20 52.63 relation to equitable access Participant recommends more targeted therapies, particularly to reduce impact of 19 23.75 5 22.73 7 29.17 7 20.59 8 19.05 11 28.95 side effects and how treatments are administered Participant recommends more investment in research to advance treatments in lung 11 13.75 3 13.64 3 12.50 5 14.71 10 23.81 1 2.63 cancer Participant describes preferring oral treatment at home 8 10.00 2 9.09 1 4.17 5 14.71 6 14.29 2 5.26

279 Lung Cancer 2018 Australian PEEK Study Section 9 Table 9.1: Expectations of future treatment (continued)

Expectations of future treatment All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant notes the importance of affordability of treatment, particularly in relation to equitable 43 53.75 30 62.50 13 40.63 18 50.00 25 56.82 access Participant recommends more targeted therapies, particularly to reduce impact of side effects and 19 23.75 9 18.75 10 31.25 6 16.67 13 29.55 how treatments are administered Participant recommends more investment in research to advance treatments in lung cancer 11 13.75 9 18.75 2 6.25 5 13.89 6 13.64 Participant describes preferring oral treatment at home 8 10.00 7 14.58 1 3.13 4 11.11 4 9.09

Expectations of future treatment All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant notes the importance of affordability of treatment, particularly 43 53.75 38 58.46 5 33.33 19 47.50 24 60.00 30 60.00 13 43.33 in relation to equitable access Participant recommends more targeted therapies, particularly to 19 23.75 15 23.08 4 26.67 5 12.50 14 35.00 11 22.00 8 26.67 reduce impact of side effects and how treatments are administered Participant recommends more investment in research to advance 11 13.75 10 15.38 1 6.67 4 10.00 7 17.50 9 18.00 2 6.67 treatments in lung cancer Participant describes preferring oral treatment at home 8 10.00 7 10.77 1 6.67 4 10.00 4 10.00 7 14.00 1 3.33

60.00

50.00

40.00

30.00

20.00

10.00

0.00 Affordability important/PBS approval Targeted therapy (less side effects) Research investment (Treatment) Oral treatment at home Efficacy/challenge with resistance

Figure 9.1: Expectations of future treatment (continued)

280 Lung Cancer 2018 Australian PEEK Study Section 9 Expectations of future information why? I think a lot more education has to be done about the different types of lung cancer. Participant 9 The most common theme was that participants described wanting more done to address stigma or educate public in relation to causes of lung cancer Participant describes wanting more done to address (n=16; 20.00%) and this was followed by not having any stigma or educate public in relation to causes of lung recommendations as they were satisfied with cancer information (n=15; 18.75%). There were 12 participants (15.00%) that described wanting to know where to access information and for health I think an awareness of it, because I think it lacks professionals to be more forthcoming with awareness as a cancer. It was a really weird information, 11 participants (13.75%) that described experiment when I had the lung cancer people just wanting to know more about tumour biomarkers could barely bring themselves to say the words. and/or sub-types of lung cancer, and 10 participants Having the brain tumour, which I had not told a lot of (12.50%) that described wanting to know more about people actually use from the lung cancer. I just don't current and emerging treatments, specific to various bother going into that detail. That's totally a different types of lung cancer. story. For the brain tumour people, you'd get a lot In relation to sub-group variations, participants with more messages of support and people could talk stage III cancer (35.29%) reported wanting to know about it and they felt they would ask about it. It was where to access information and for health just like having two different, totally different things professionals to be more forthcoming with go wrong with you. Whereas the lung cancer and I information, more frequently than the general don't know whether it was being younger and being population (15.00%). There were no participants from associated with the word cancer that people just regional or rural areas that reported wanting to know freaked out about. I'm sure if I'd said breast cancer or more about biomarker (general population 13.75%). something like that, I'm sure I potentially would've had a different reaction from people, but yet being lung cancer people just would barely. I don't even Participant describes wanting more done to address think they said the word. It's really weird. It was that stigma or educate public in relation to causes of lung I was quite interesting with the brain tumour that the cancer reaction was so different to that. That could be a cancer thing people freaking out. Participant 66

I was going to say more information and just to people as well just the stigma is also that you know Participant describes wanting to know where to oh it's a smoker's disease you sort of you know not access information and for health professionals to be deserve it but it's your fault you know which is horrible more forthcoming with information to say even if you are a smoker but you know there's It's about how you access it. I now know that Cancer this nonsense yet you do get lung cancer. I think the Australia have put out some clinical guidelines for fact that lung cancer is not only a smoker's disease lung cancer and that's just happened. It would be needs to be more known out there no evil. Like I said good if when you're first diagnosed you are given a the first question people ask me what are. You roadmap to where you could find help and smoked. No I didn't I never smoked. So yeah just that information. That would really help, because then you probably being the most common question I think it wouldn't spend a lot of time Google searching and should be just made aware that yeah it's not only a accessing information that isn't necessarily helpful or smokers disease. Participant 3 accurate at the moment. Participant 22

Everyone's understanding, that I've talked to, when Yes. I think it's the education of it. From my you're diagnosed with lung cancer, I think a lot of experience, you have to go and source the people are very reluctant to talk about it because information yourself. No one comes and says, "This is people's perception that you smoke so it's your fault. where you can sort of learn more about your cancer," My type of lung cancer is not caused by smoking and and stuff like that. You just rely on your doctors. Even a lot of young people, and this I didn't understand, though there are lung doctors, there's specialists as that a lot of young people get it, it makes you wonder well within each type of lung cancer. Also I guess the places in the hospital that you go to, like DOCTOR 281 Lung Cancer 2018 Australian PEEK Study Section 9 NAME seems to be really good from my experience On myself, I didn't know that there was these different with him. I'm not a patient there and the assistance types of mutations that cause lung cancer, and I only seems to be really good. Where I'm being treated, the know now because I have one of these and I've read resources that they have available doesn't seem to up and there are other mutations too. In breast quite stack up to what DOCTOR NAME is like. They cancer, there's a whole lot of information out there, don't have as many resources and they don't have a but for lung cancer, it's a very insular type of cancer lung cancer nurse, as well that contacts you. That sort and people think that only old people get it, and of thing. Things like that. Participant 35 smokers get it and that's it, which is not the case. Participant 9

Participant describes wanting to know where to access information and for health professionals to be Also, the whole mutation testing. I had no idea that more forthcoming with information you could even do that. I'm very grateful that the respiratory physician I got was very, very thorough. He's fabulous actually. Then I started to hear little bits When you’re first diagnosed, there’s so much of there's been a big discovery explaining lung cancer information that you're bombarded with them and lately and if you have this mutation. Participant 49 generally for a lot of us it's a really left field diagnosis, it's hard to take that all in. Being directed to the right places to get that information early. If there was some Participant describes wanting to know more about kind of resource available along those lines, I think tumour biomarkers and/or sub-types of lung cancer that would be really beneficial. Participant 45

Well, I had never understand that these mutations Participant describes wanting to know more about and all that. I suppose if I haven't got any, I probably tumour biomarkers and/or sub-types of lung cancer don't need to know about them. I've got adenocarcinoma with metastasis, a non small cell, If they're going to continue monitoring me, it's and that's about really all I know about what it is. Yes, because there's a potential that it could recur or to a little bit more information on the different types of look at what sort of…is there a genetic reason? Is those would have been interesting. Initially, I suppose, there a genetic component to it? So that I know is it in it was a bit hard to take it all in, but now down the my family? Is there a chance I should tell something to track, it's a bit frustrating to not understand some of my children? Participant 4 the-- What would you say? The histology, I suppose. You know what I mean? That aspect of it all. Participant 65 Table 9.2: Expectation of future information

Expectation of future information All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes wanting more done to address stigma or educate public in relation to 16 20.00 5 29.41 3 17.65 8 17.39 8 23.53 causes of lung cancer

Participant does not have any 15 18.75 3 17.65 2 11.76 10 21.74 5 14.71 recommendations/satisfied with information Participant describes wanting to know where to access information and for health professionals to 12 15.00 1 5.88 6 35.29 5 10.87 7 20.59 be more forthcoming with information Participant describes wanting to know more about tumour biomarkers and/or sub-types of 11 13.75 4 23.53 3 17.65 4 8.70 7 20.59 lung cancer Participant describes wanting to know more about current and emerging treatments, specific 10 12.50 1 5.88 3 17.65 6 13.04 4 11.76 to various types of lung cancer

282 Lung Cancer 2018 Australian PEEK Study Section 9 Table 9.2: Expectation of future information (continued)

Expectation of future information All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes wanting more done to address stigma or educate public in relation 16 20.00 4 18.18 4 16.67 8 23.53 9 21.43 7 18.42 to causes of lung cancer Participant does not have any recommendations/satisfied with 15 18.75 4 18.18 6 25.00 5 14.71 9 21.43 6 15.79 information Participant describes wanting to know where to access information and for health 12 15.00 3 13.64 2 8.33 7 20.59 4 9.52 8 21.05 professionals to be more forthcoming with information Participant describes wanting to know more about tumour biomarkers and/or sub-types 11 13.75 3 13.64 1 4.17 7 20.59 5 11.90 6 15.79 of lung cancer Participant describes wanting to know more about current and emerging treatments, 10 12.50 3 13.64 3 12.50 4 11.76 5 11.90 5 13.16 specific to various types of lung cancer

Expectation of future information All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes wanting more done to address stigma or educate public in relation to 16 20.00 7 14.58 9 28.13 7 19.44 9 20.45 causes of lung cancer

Participant does not have any 15 18.75 12 25.00 3 9.38 7 19.44 8 18.18 recommendations/satisfied with information Participant describes wanting to know where to access information and for health professionals to 12 15.00 6 12.50 6 18.75 4 11.11 8 18.18 be more forthcoming with information Participant describes wanting to know more about tumour biomarkers and/or sub-types of 11 13.75 7 14.58 4 12.50 7 19.44 4 9.09 lung cancer Participant describes wanting to know more about current and emerging treatments, specific 10 12.50 8 16.67 2 6.25 5 13.89 5 11.36 to various types of lung cancer

Expectation of future information All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes wanting more done to address stigma or educate public in relation to causes of lung 16 20.00 14 21.54 2 13.33 9 22.50 7 17.50 9 18.00 7 23.33 cancer Participant does not have any recommendations/satisfied with 15 18.75 11 16.92 4 26.67 9 22.50 6 15.00 9 18.00 6 20.00 information Participant describes wanting to know where to access information and for health professionals to be more 12 15.00 10 15.38 2 13.33 5 12.50 7 17.50 7 14.00 5 16.67 forthcoming with information Participant describes wanting to know more about tumour biomarkers and/or 11 13.75 11 16.92 0 0.00 5 12.50 6 15.00 6 12.00 5 16.67 sub-types of lung cancer Participant describes wanting to know more about current and emerging treatments, specific to various types of 10 12.50 9 13.85 1 6.67 5 12.50 5 12.50 6 12.00 4 13.33 lung cancer

283 Lung Cancer 2018 Australian PEEK Study Section 9

25.00

20.00

15.00

10.00

5.00

0.00 Address stigma/educate re Satisfied/No Access to reliable Mutations/genetics Diagnostic tools, clin trials, non-smoking causes recommendations information at diagnosis and treatments later stages

Figure 9.2: Expectation of future information

Expectations of future health professional Participant describes wanting clinicians to display communication more compassion/empathy or establish a connection with their patients The most common themes were that participants wanted clinicians to display more compassion/empathy or establish a connection with Empathy and I guess, knowing, understanding that their patients (n=20; 25.00%) and equal to this was someone who has come in for tests results, their focus experiencing good communication from health is on that. That initial impact of walking into the room professionals, therefore having no recommendation and one of them saying, “Your test are fine," before I (n=20; 25.00%). There were 14 participants (17.50%) even sat down, that made a big difference to me, to that described wanting clinicians to explain their my parents. Whereas, I've had other doctors who I've diagnosis/prognosis/test results/treatment more sat down and they proceed to ask me, “How are you clearly, and nine participants (11.25%) that described feeling? How'd you been going?” They haven't told the importance of nurses or the need for specialist lung me yet what my results are. I found that difficult. cancer nurse coordinator. Participant 13 In relation to sub-group variations, Participants with stage I to III lung cancer and no distant metastases (14.71%) reported wanting clinicians to display more I guess just as a general, I think, as a patient of any compassion, less frequently than the general cancer that I think doctors just doesn't seem to hear population (25.00%). Participants with stage I and II us. That can't hear me anyway, sometimes. What I'm lung cancer (35.29%) had no recommendations and saying so I guess a little bit more compassion I don’t were satisfied with communication, more frequently know if what I mentioned is the right word to at least than the general population (25.00%). take notice of what I'm saying because the other night, I guess because it is such a busy clinic that you

get to. They just sometimes don't hear what you're saying you heard. Participant 36

284 Lung Cancer 2018 Australian PEEK Study Section 9 Just give people the time they need, just explain Participant describes wanting clinicians to explain things. I thought it's hard because some of them are their diagnosis/prognosis/test results/treatment already- they don't just seem to have much more clearly compassion. It's just maybe if they can get to know the patient a bit more and understand the sorts of things going on for them, it's not just the care, it could Yes, I think there needs to be a little bit more of a be a lot more things. I guess I don't know the time, but structured medical plan for patients. I think there's it's important to know your patients to be better, so none of that. It seems to me…Well, I have got to have you know what's going on for them. Participant 58 a conversation by oncologist, ''what's the plan should made [sic]? What are we looking specifically to me? What alternative options do I have? What might be a Participant describes experiencing good combination we should think about?'' They say, communication from health professionals/no "Don't worry about it. We'll cross that path when it recommendation comes." That's being reactive to me. I'm a bit more proactive, I get frustrated. Participant 29

I've been really happy with my doctors. Yes, every time I've seen them at the Cancer Centre at I guess explaining things. I don't know how you get a LOCATION, they're always made, they're always very professional, maybe an oncologist to say, "You need helpful and kind and treat me with respect. I hope that to go find further information yourself," sort of thing. people who go to other medical specialists are treated I guess I've learned a lot more about my condition the same way because they're really great down from going online and being in this Facebook group there. I consider myself lucky that I go there. than what I've gotten from my oncologist. When I go Participant 9 see my oncologist, he usually says, "Oh the results. This is the result from the last scan da-da-da-da-da." He doesn't sit down and slowly explain, "This is the Not at all. I think from my experience everyone has type of lung cancer you have." The minute details like been forthright, factual. That's how I like it. Not that, what exactly happens and also the different patronizing or anything like that, so I wouldn't. I've types of trials that are out there and that sort of thing. got no issue with that. Participant 38 Participant 35

I was very fortunate. I had a fabulous oncologist that I think first of all when I was first diagnosed there he was able to turn anything negative into a positive. were so many different doctors and I didn't know who I think if oncologists could honestly take a leaf out of they were. They introduced their names but I didn't his book and a page out of his book and be more like know who they were. Like, "Hi. My name is Professor that because I've heard terrible stories of people John Smith," but I didn't know that Professor John having rotten experiences with their oncologists. It's Smith is going to be my cardiothoracic surgeon. What almost like they almost give up then. I was like, "Oh, the differences of the different doctors were. There god that seems horrible." I'm like, "Go and see my was just six different doctors that said they were oncologist. He's amazing." I know that they can't doctors but I didn't know who they were. I think promise the world and all that, but a little bit of there's a need for proper introduction and bedside manner and treating people in a hopeful explanation of where they fit into a person's medical manner, I think goes a long way to be honest because team. Participant 74 sometimes all you hold on to is your hope. Participant 55

285 Lung Cancer 2018 Australian PEEK Study Section 9 Table 9.3: Expectations of communication

Expectations of communication All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes wanting clinicians to display more compassion/empathy or establish a 20 25.00 2 11.76 3 17.65 15 32.61 5 14.71 connection with their patients Participant describes experiencing good communication from health professionals/no 20 25.00 6 35.29 3 17.65 11 23.91 9 26.47 recommendation Participant describes wanting clinicians to explain their diagnosis/prognosis/test results/treatment 14 17.50 3 17.65 3 17.65 8 17.39 6 17.65 more clearly Participant describes importance of nurses or the need for specialist lung cancer nurse coordinator 9 11.25 2 11.76 3 17.65 4 8.70 5 14.71 Participant describes wanting better provision of information in relation to diagnosis 6 7.50 3 17.65 2 11.76 1 2.17 5 14.71 Participant describes importance of clinicians conveying hope to patients 6 7.50 0 0.00 1 5.88 5 10.87 1 2.94 Participant describes wanting health professionals 6 7.50 2 11.76 2 11.76 2 4.35 4 11.76 to stop perpetuating stigma of smoking

Expectations of communication All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes wanting clinicians to display more compassion/empathy or 20 25.00 7 31.82 8 33.33 5 14.71 10 23.81 10 26.32 establish a connection with their patients Participant describes experiencing good communication from health 20 25.00 6 27.27 5 20.83 9 26.47 14 33.33 6 15.79 professionals/no recommendation Participant describes wanting clinicians to explain their diagnosis/prognosis/test 14 17.50 5 22.73 3 12.50 6 17.65 7 16.67 7 18.42 results/treatment more clearly Participant describes importance of nurses or the need for specialist lung cancer nurse 9 11.25 2 9.09 2 8.33 5 14.71 6 14.29 3 7.89 coordinator Participant describes wanting better provision of information in relation to 6 7.50 0 0.00 1 4.17 5 14.71 2 4.76 4 10.53 diagnosis Participant describes importance of clinicians conveying hope to patients 6 7.50 2 9.09 3 12.50 1 2.94 3 7.14 3 7.89 Participant describes wanting health professionals to stop perpetuating stigma of 6 7.50 1 4.55 1 4.17 4 11.76 3 7.14 3 7.89 smoking

Expectations of communication All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes wanting clinicians to display more compassion/empathy or establish a 20 25.00 11 22.92 9 28.13 7 19.44 13 29.55 connection with their patients Participant describes experiencing good communication from health professionals/no 20 25.00 15 31.25 5 15.63 10 27.78 10 22.73 recommendation Participant describes wanting clinicians to explain their diagnosis/prognosis/test results/treatment 14 17.50 7 14.58 7 21.88 6 16.67 8 18.18 more clearly Participant describes importance of nurses or the need for specialist lung cancer nurse coordinator 9 11.25 6 12.50 3 9.38 4 11.11 5 11.36 Participant describes wanting better provision of information in relation to diagnosis 6 7.50 3 6.25 3 9.38 3 8.33 3 6.82 Participant describes importance of clinicians conveying hope to patients 6 7.50 4 8.33 2 6.25 2 5.56 4 9.09 Participant describes wanting health professionals 6 7.50 2 4.17 4 12.50 4 11.11 2 4.55 to stop perpetuating stigma of smoking

286 Lung Cancer 2018 Australian PEEK Study Section 9 Table 9.3: Expectations of communication (continued)

Expectations of communication All participants Less pain More pain Older (55 and older) Younger (18 to 54)

30.00

25.00

20.00

15.00

10.00

5.00

0.00 More Good communication/no Explain more clear ly Nurses/nurse coordinator Diagnostic pack/more Convey hope Stigma of smoking compassion/empathy/connection recommendations information/other support Figure 9.3: Expectations of communication

Expectations of future care and support participants (10.00%) that recommended more psychological support, eight participants (10.00%) that The most common recommendation was for more recommended more opportunities for patients to support groups and support from charities (n=17; connect with each other and eight participants 21.25%) and this was followed by improved funding for (10.00%) that recommended improved practical/home staff involved in treating lung cancer, specifically lung support. cancer nurses (n=13; 16.25%). There were eight 287 Lung Cancer 2018 Australian PEEK Study Section 9 In relation to sub-group variations, participants with Participant's recommendation is for improved funding stage I and II lung cancer (35.29%) recommended more for staff – lung cancer nurses support groups and support from charities, more frequently than the general population (21.25%), while those with worse energy/fatigue (10.53%) We need lung cancer nurses in hospitals. We need recommended this less frequently. lung cancer care nurses…To have lung cancer care nurses in oncology clinics across Australia would just Participant's recommendation is for more support be so valuable because they support in the direction groups/charity support of resources, they can help you with what information you need, they can clarify for you that you might not have that and had time or known to cover. I know I actually think that the NAME which is a cancer NAME has acted as a point of contact for me when I support center at the HOSPITAL, it's a private hospital, needed to arrange scans, and I needed to access but anyone can go to the NAME. I actually think results. They're just that point of contact for patients having something similar to that at every major for them to go to, to really feel like their carer is more hospital. It has a library full of information, it has a personalized really. Participant 19 couple of meeting rooms where they can have support groups and run things like that. There's also a reflexologist and other things there plus Well, I think that if there could be a lung cancer nurse accommodation, it's also an accommodation place for program in the way that there is for the breast cancer people that are having treatment or come from nurses. That would be a massive step forward, another country. If every major hospital had because well for all the reasons I've talked about something like that, that you would get…like most already. It'd be great if there was somebody you can hospitals have pink ladies or yellow ladies or meet in person. Also, just a telephone services also whatever, if the facility was there, having that as a equally good if geography means you can't have a support for the people that want to help out people lung cancer nurse everywhere. I just think that that that need the support. Participant 12 would make a huge difference. Having [inaudible 00:12:01] to someone to talk to to keep you informed, who isn't necessarily, you know they're not going to They could arrange more like for like people, like cure you, they can just talk to you about how you groups, interactions, so we can discuss things that manage symptoms. A lot of it is managing symptoms, we're going through. Face to face, rather than people and nurses are a great resource for that. Especially if online. Some sort of groups or wellness activities that they've specialized. If there was one thing that could we can talk throughout our treatments. I think that be done that would be it. I just think that would make, would be really, really good. That's my main thing, I yes, massive difference. Participant 22 think, for me. Participant 31

If we could significantly boost the number of lung I think if people aren't able to do that themselves, cancer specialist nurses, Australia wide. That, I think, they, obviously, need the support groups or the that one thing would have a huge impact on the people in the cancer centers to help them with that, quality of life of lung cancer patients. Because, help support them in finding that information, finding without that level of experience from a nurse, given the right information and explaining it, what it that doctors are always flat chat going from patient means, what's going to happen, and that sort of stuff. to patient. The nurse is the backstop, the coordinator, Participant 54 the person who can sort things out for you. If they understand lung cancer really well, they can really help you. That's the really critical piece. Participant 59

288 Lung Cancer 2018 Australian PEEK Study Section 9 Table 9.4: Expectations of future care and support

Expectations of future care and support All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant's recommendation is for more support groups/charity support 17 21.25 6 35.29 2 11.76 9 19.57 8 23.53 Participant's recommendation is for improved funding for staff involved in treating lung cancer – 13 16.25 2 11.76 4 23.53 7 15.22 6 17.65 lung cancer nurses Participant's recommendation is for more psychological support, especially telephone-based 8 10.00 3 17.65 1 5.88 4 8.70 4 11.76 Participant's recommendation is for more opportunities to connect with other patients 8 10.00 0 0.00 2 11.76 6 13.04 2 5.88 Participant's recommendation is for improved 8 10.00 3 17.65 1 5.88 4 8.70 4 11.76 practical or in-home support

Expectations of future care and support All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant's recommendation is for more support groups/charity support 17 21.25 4 18.18 5 20.83 8 23.53 13 30.95 4 10.53 Participant's recommendation is for improved funding for staff involved in 13 16.25 5 22.73 2 8.33 6 17.65 8 19.05 5 13.16 treating lung cancer – lung cancer nurses Participant's recommendation is for more psychological support, especially telephone- 8 10.00 3 13.64 1 4.17 4 11.76 1 2.38 7 18.42 based Participant's recommendation is for more opportunities to connect with other 8 10.00 3 13.64 3 12.50 2 5.88 4 9.52 4 10.53 patients Participant's recommendation is for 8 10.00 0 0.00 4 16.67 4 11.76 5 11.90 3 7.89 improved practical or in-home support

Expectations of future care and support All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

Expectations of future care and All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low support remote school SEIFA n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant's recommendation is for more support groups/charity support 17 21.25 14 21.54 3 20.00 7 17.50 10 25.00 13 26.00 4 13.33 Participant's recommendation is for improved funding for staff involved in treating lung cancer – lung cancer 13 16.25 11 16.92 2 13.33 6 15.00 7 17.50 11 22.00 2 6.67 nurses Participant's recommendation is for more psychological support, especially 8 10.00 7 10.77 1 6.67 4 10.00 4 10.00 4 8.00 4 13.33 telephone-based Participant's recommendation is for more opportunities to connect with 8 10.00 5 7.69 3 20.00 4 10.00 4 10.00 6 12.00 2 6.67 other patients Participant's recommendation is for 8 10.00 8 12.31 0 0.00 2 5.00 6 15.00 4 8.00 4 13.33 improved practical or in-home support

289 Lung Cancer 2018 Australian PEEK Study Section 9

25.00

20.00

15.00

10.00

5.00

0.00 Patient resources/support Staff funding/Specialist Lung Psychological/telephone support Opportunity to connect with Practical or at-home support groups Cancer Nurses other patients

Figure 9.4: Expectations of future care and support

Aspects of the Australian health system that patients stage I or II lung cancer that described being grateful are grateful for for access to oncologists (through Medicare), while participants with stage III lung cancer (35.29%) and The most common theme was participants describing those from regional or remote areas (26.67%), being grateful for access to treatment through described this more frequently than the general Medicare (n=39; 48.75%) and this was followed by population (15.00%). There were no participants with being grateful for the entire health system (n=32; stage III lung cancer that described being grateful for 40.00%). There were 27 participants (33.75%) that access to hospital care (through Medicare), compared were grateful for the health system being low cost/free to the general population (12.50%). Participants with and 12 participants (15.00%) that described being stage III lung cancer (23.53%) described being grateful grateful for access to oncologists through Medicare. for access to diagnostic tests (through Medicare), more In relation to sub-group variations, participants with frequently than the general population (11.25%). stage I to III lung cancer and no distant metastases (38.24%), reported being grateful for access to treatment (through Medicare), less frequently than the Participant describes being grateful for access to general population (48.75%), while those with brain treatment (through Medicare) metastases (59.09%) reported this more frequently. Participants with stage II lung cancer (58.82%) described being grateful for the entire health system, Yes, just... so much health is a public patient to be out more frequently than the general population (40.00%). to get the treatment and get it timely, without much Participants with stage I or II lung cancer (23.53%) cost. It's something that I'm grateful for. Like in the US described being grateful for the health system being it's a lot different. They have to get approval from the low cost/free, less frequently than the general health insurance to be out, to go on the specific population (33.75%). There were no participants with medication. Some of the hospitals interrogate the

290 Lung Cancer 2018 Australian PEEK Study Section 9 treatment on compassionate grounds as well. As I said also have other emails that come into me about lung some of the new medication, you have to get it on cancer from America where they have a team of compassionate access is great. I guess the other thing doctors that look after…they want to see your patent, is that the PBS approval, if you have to fund your own there's s actually a discussion about what they're treatment on medication that’s on the PBS I'm not doing with you and so on and so forth. In terms of sure how people naturally do it. Participant 35 what we get, we have, I'm grateful for all of it. Participant 36

Yes, I'm grateful that Tarceva is on the PBS and it come on the PBS about six days before I started taking Participant describes being grateful for the health it. I'm very lucky. How lucky was that? I'm grateful system being low cost/free that other lung cancer treatments/ tablets are on PBS.

I'm not sure about Chemo, I don't know where that stands with it….Grateful for the doctors and lab Yes, we're so lucky here in Australia that the people who are doing all the work. Participant 38 medication-- type of medication that I'm on is on the PBS, it was only put on the PBS from the 1st January

and it was…I thank God every day for that and we're Participant describes being grateful for the entire very lucky because when I read that overseas, even in health system America some patients still have to pay out of their own pocket thousands and thousands. We really don't

realize just how lucky we are here with our health Everything, I'm so grateful for everything. I've got…by system. Participant 9 chance I got on to the respiratory consultant who's the senior lecturer at the HOSPITAL. How grateful am I to have that guy, I wouldn't have got anybody in the I'm really grateful for the PBS. [laughs] I never whole private sector, but I'm very grateful for him. I'm thought I would be like, "Wow." I'm so glad that grateful for my oncologist. I'm grateful for the included the drug on there because my life would be machinery. We have the latest radiation machines quite different right now if it wasn't for the PBS in here, the latest technology. All the things I was January this year. [laughs] Yes, so, very grateful that offered, dieticians, oncologists, something else I we've got that system in place, because it could be forget. I am so grateful for everything. Participant 1 financially devastating not just for you, for your whole family which is not something that you want to have

to deal with. Participant 62 I just thank God for Medicare. What more can I say?

Participant 26 We don't have to pay for our own treatment and

that's an enormous burden relieved from I'm grateful for everything that I've access and families. Participant 67 grateful for the free hospital care, the free medication that will not so much free but the PBS funded medication and be able to access compassionately, Yes. I think we're pretty lucky, the targeted treatment I'm grateful for all of that. There's just that we need I've got is on the PBS, so it's not costing me $70. to…I guess in terms of patient care. When I look at Participant 54 some of the dialogue in some of the Americans like I

291 Lung Cancer 2018 Australian PEEK Study Section 9 Table 9.5: What patients are grateful for in the Australian health system

What patients are grateful for in the All participants Stage I and II Stage III Stage IV Stage I to III Australian health system n=80 % n=17 % n=17 % n=46 % n=34 % Participant describes being grateful for access to 39 48.75 6 35.29 7 41.18 26 56.52 13 38.24 treatment (through Medicare) Participant describes being grateful for the entire 32 40.00 7 41.18 10 58.82 15 32.61 17 50.00 health system

Participant describes being grateful for the health 27 33.75 4 23.53 7 41.18 16 34.78 11 32.35 system being low cost/free Participant describes being grateful for access to 12 15.00 0 0.00 6 35.29 6 13.04 6 17.65 oncologists (through Medicare)

Participant describes being grateful for access to 10 12.50 2 11.76 0 0.00 8 17.39 2 5.88 hospital care (through Medicare)

Participant describes being grateful for access to 9 11.25 1 5.88 4 23.53 4 8.70 5 14.71 diagnostic tests (through Medicare) Participant describes being grateful for access to 8 10.00 2 11.76 1 5.88 5 10.87 3 8.82 treatment in private hospital system Participant describes being grateful for access to 7 8.75 1 5.88 0 0.00 6 13.04 1 2.94 specialists through the private health system

What patients are grateful for in the All participants Brain metastases Other metastases No distant Better Worse Australian health system metastases energy/fatigue energy/fatigue n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant describes being grateful for 39 48.75 13 59.09 13 54.17 13 38.24 20 47.62 19 50.00 access to treatment (through Medicare) Participant describes being grateful for the 32 40.00 7 31.82 8 33.33 17 50.00 14 33.33 18 47.37 entire health system

Participant describes being grateful for the 27 33.75 8 36.36 8 33.33 11 32.35 16 38.10 11 28.95 health system being low cost/free Participant describes being grateful for 12 15.00 3 13.64 3 12.50 6 17.65 7 16.67 5 13.16 access to oncologists (through Medicare)

Participant describes being grateful for 10 12.50 4 18.18 4 16.67 2 5.88 2 4.76 8 21.05 access to hospital care (through Medicare) Participant describes being grateful for access to diagnostic tests (through 9 11.25 2 9.09 2 8.33 5 14.71 5 11.90 4 10.53 Medicare) Participant describes being grateful for access to treatment in private hospital 8 10.00 1 4.55 4 16.67 3 8.82 3 7.14 5 13.16 system Participant describes being grateful for access to specialists through the private 7 8.75 2 9.09 4 16.67 1 2.94 3 7.14 4 10.53 health system

What patients are grateful for in the All participants Less pain More pain Older (55 and older) Younger (18 to 54) Australian health system n=80 % n=48 % n=32 % n=36 % n=44 % Participant describes being grateful for access to 39 48.75 22 45.83 17 53.13 16 44.44 23 52.27 treatment (through Medicare) Participant describes being grateful for the entire 32 40.00 21 43.75 11 34.38 13 36.11 19 43.18 health system

Participant describes being grateful for the health 27 33.75 15 31.25 12 37.50 10 27.78 17 38.64 system being low cost/free Participant describes being grateful for access to 12 15.00 8 16.67 4 12.50 3 8.33 9 20.45 oncologists (through Medicare)

Participant describes being grateful for access to 10 12.50 3 6.25 7 21.88 4 11.11 6 13.64 hospital care (through Medicare)

Participant describes being grateful for access to 9 11.25 8 16.67 1 3.13 3 8.33 6 13.64 diagnostic tests (through Medicare) Participant describes being grateful for access to 8 10.00 4 8.33 4 12.50 3 8.33 5 11.36 treatment in private hospital system Participant describes being grateful for access to 7 8.75 5 10.42 2 6.25 5 13.89 2 4.55 specialists through the private health system

292 Lung Cancer 2018 Australian PEEK Study Section 9 Table 9.5: What patients are grateful for in the Australian health system (continued)

What patients are grateful for in All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low the Australian health system remote school SEIFA n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant describes being grateful for access to treatment (through 39 48.75 32 49.23 7 46.67 19 47.50 20 50.00 23 46.00 16 53.33 Medicare)

Participant describes being grateful for 32 40.00 26 40.00 6 40.00 16 40.00 16 40.00 19 38.00 13 43.33 the entire health system Participant describes being grateful for 27 33.75 21 32.31 6 40.00 13 32.50 14 35.00 18 36.00 9 30.00 the health system being low cost/free Participant describes being grateful for access to oncologists (through 12 15.00 8 12.31 4 26.67 4 10.00 8 20.00 7 14.00 5 16.67 Medicare) Participant describes being grateful for access to hospital care (through 10 12.50 8 12.31 2 13.33 5 12.50 5 12.50 5 10.00 5 16.67 Medicare) Participant describes being grateful for access to diagnostic tests (through 9 11.25 7 10.77 2 13.33 5 12.50 4 10.00 8 16.00 1 3.33 Medicare) Participant describes being grateful for access to treatment in private hospital 8 10.00 7 10.77 1 6.67 2 5.00 6 15.00 6 12.00 2 6.67 system Participant describes being grateful for access to specialists through the 7 8.75 7 10.77 0 0.00 3 7.50 4 10.00 6 12.00 1 3.33 private health system

60.00

50.00

40.00

30.00

20.00

10.00

0.00

Low cost/free

Entire health system Hospital (Medicare) Tr eatm ent (Private) Specialists (Private) Tr eatm ent (Medicare) Oncologists (Medicare)

Diagnostic/monitoring tests (Medicare)

Figure 9.5: What patients are grateful for in the Australian health system

293 Lung Cancer 2018 Australian PEEK Study Section 9 Values when making decisions about treatment Symptoms/aspects of quality of life important for treatments Participants were asked to rank which symptoms/aspects of quality of life would they want Participants were asked about the value of access to controlled in a treatment for them to consider taking treatments that reduce symptoms and improve quality it, were 1 is the most important and 8 is the least of life even if they do not offer a cure. The majority of important. A weighted average is presented in Figure participants thought that it would be of very significant 9.7. With a weighted ranking, the higher the score, the or significant value (n=73, 92.25%), six participants greater value it is to participants. The most important (7.50%) felt it would be of moderate or some value, aspects reported were pain, nausea and vomiting, and and 1 participant (1.25%) felt it would be of no value. diarrhea; the least important were mouth ulcers, and hair loss. Figures 9.7 to 9.10 show the weighted rank by Table 9.6: Value of treatment to improve symptoms lung cancer stage, distant metastases, and brain and quality of life metastases. The most import symptoms for those with advanced lung cancer were loss of appetite, and hair

Value of access to treatments that reduce symptoms, loss, compared to invasive disease and early stage lung improve quality of life, but may not offer a cure N=80 Percent cancer where the most important side effects were No value at all to me 1 1.25 pain, and nausea and vomiting; by stage, mouth ulcers Some value to me 2 2.50 were least important to all subgroups, however for Moderate value to me 4 5.00 Significant value to me 11 13.75 advanced disease, pain was the second least important Very significant value to me 62 77.50 side effect compared to the whole cohort where pain

was the most important side effect. 90 80 70 60 By distant metastases, the most important those with 50 metastases were loss of appetite and hair loss, and 40 Percent Percent similar to the entire cohort, the least important side 30 effect was mouth ulcers for both those with distant 20 metastases and those without. Similar to the entire 10 cohort, those with no metastases, the most important 0 No value at all Some value to Moderate value Significant value Very significant side effects were pain and nausea. By brain metastases to me me to me to me value to me the symptoms and aspects of quality of life were similar to those for the entire cohort. Figure 9.6: Value of treatment to improve symptoms and quality of life

Tiredness and fatigue Tiredness and fatigue Mouth ulcers Mouth ulcers Constipation Constipation Diarrheoa Diarrheoa Loss of appetitie Loss of appetitie Pain

Pain Hair loss

Hair loss Nausea and vomiting

Nausea and vomiting 0.00 1.00 2.00 3.00 4.00 5.00 6.00 7.00 8.00 Weighted average 0.00 1.00 2.00 3.00 4.00 5.00 6.00 7.00 8.00 Weighted average Advanced Invasive Early

Figure 9.7: Symptoms/aspects of quality of life important for Figure 9.8: Symptoms/aspects of quality of life important treatments all participants for treatments by lung cancer stage

Lung Cancer 2018 Australian PEEK Study 294 Section 9

Figure 9.9: Symptoms/aspects of quality of life important for Figure 9.10: Symptoms/aspects of quality of life treatments by distant metastases important for treatments by brain metastases

Values that are important to patients when making higher the score, the greater value it is to participants. The most important aspects were financial costs to the decisions participant and their family, safety of treatment/weighing up risks and benefits, and severity Participants were asked to rank what is important for of side effects. The least important were ability to them overall when they make decisions about follow and stick to a treatment, and including family in treatment and care, where 1 is the most important and decision-making. Figures 9.11 to 9.14 show the 8 is the least important. A weighted average is weighted rank by all participants, lung cancer stage, presented in Figure 9.11. With a weighted ranking, the distant metastases, and brain metastases.

Financial costs to me & family My ability to follow and stick to a treatment Ability to include my family in treatment…

How personalised the treatment is How the treatment is administered

Severity of side effects

Medication safety & weighing up the risks…

0 1 2 3 4 5 6 7 8 Weighted average

Advanced Invasive Early

Figure 9.11: Values important when making decisions all Figure 9.12: Values important when making decisions participants by lung cancer stage

Figure 9.13: Values important when making decisions Figure 9.14: Values important when making decisions by distant metastases by brain metastases

295 Lung Cancer 2018 Australian PEEK Study Section 9

Values that are important to patients when others participants. The two most important values were are making decisions on their behalf quality of life for patients, and access for all patients to all treatments and services; the least important was Participants were asked to rank what is important for economic value to government. Figures 9.15 to 9.18 decision-makers to consider when they make decisions show the weighted lung cancer stage, distant that impact treatment and care, where 1 is the most metastases, and brain metastases, the values for important and 5 is the least important. A weighted making decisions on their behalf are similar within sub average is presented in Figure 9.15. With a weighted groups and are similar to the overall cohort. ranking, the higher the score, the greater value it is to

All patients being able to access all available All patients being able to access all available treatments and services treatments and services

Compassion Compassion

Quality of life for patients Quality of life for patients

Economic value to patients and their families Economic value to patients and their families Economic value to government and tax payers Economic value to government and tax payers 0 1 2 3 4 5 Weighted average 0 1 1 2 2 3 3 4 4 5 Weighted average Advanced Invasive Early

Figure 9.15: Values to consider on behalf of Figure 9.16: Values to consider on behalf of patients/families all participants patients/families by lung cancer stage

All patients being able to access all available All patients being able to access all available treatments and services treatments and services

Compassion Compassion

Quality of life for patients Quality of life for patients

Economic value to patients and their families Economic value to patients and their families

Economic value to government and tax Economic value to government and tax payers payers

0 1 2 3 4 5 0 1 2 3 4 5 Weighted average Weighted average

Metastases No metastases No metastases Other metastases Brain metastases

Figure 9.17: Values to consider on behalf of Figure 9.18: Values to consider on behalf of patients/families by distant metastases patients/families by brain metastases

Lung Cancer 2018 Australian PEEK Study 296 Section 9 Message to decision-makers It would be that lung cancer is the biggest cause of this and all cancers, so why can't we have proper funding There were three key themes and the most common like other cancers. Participant 75 message was that there needs to be more equitable funding for lung cancer research (n=35; 47.75%). This Participant's message is that there needs to be faster was followed by the need for faster access to therapies access to therapies for lung cancer through the PBS for lung cancer through the government reimbursement process (n=32; 40.00%), and the need Well, my big thing would be that they approve for more awareness to address stigma and increase medications a lot quicker than they do for people like compassion (n=27; 33.75%). myself with a gene mutation, there's targeted therapy out there. If I could get them on trial or be approved a In relation to sub-group variations, participants from lot faster or as soon as they get approved overseas, I regional or remote areas (33.33%) and those from mid can't see why they can't approve them here. to low SEIFA areas (33.33%), noted that there should Participant 31 be equitable funding/more funding for lung cancer research, less frequently than the general population I would say that they need to approve drugs more (43.75%). Participants with stage I to III lung cancer and quickly. Participant 49 those with no distant metastases (23.53%) and those with a trade or high school education (27.50%), had the I'd tell him that we need all the help we can get with message that there needs to be faster access to regard to having free access to drugs that are medicine, less frequently than the general population available, more of a funding for lung cancer and more (40.00%), while those with stage IV lung cancer awareness for lung cancer, more research, et cetera. (52.17%), those with brain metastases (63.64%), those Yes, I'd say to him that if you had lung cancer or your from regional or remote areas (60.00%) and those with wife had lung cancer, wouldn't you like to have a university degree (52.50%) described this more everything possible drug available and treatment frequently. Participants with stage I and II lung cancer available for her to overcome this horrible disease. (23.53%), those with no distant metastases (23.535%) Something like that. Participant 65 and those from regional or remote areas (20.00%), described the negative stigma attached to lung cancer, Participant's message is that there is a negative less frequently than the general population (33.755), stigma associated with lung cancer and more while those with brain metastases (63.64%) described awareness is needed to drive compassion and equity this more frequently. It is so sad that as soon as you say to somebody you've Participant's message is that there should be got lung cancer, they still don't know, they think equitable funding/more funding for lung cancer you're a smoker. Whether you smoked or not actually research makes no difference to how people see you as a person. Personally, I haven't smoked for nearly thirty Primarily more money for research is the first thing, years and my lung cancer was more of a generic one. more education for people particularly with Participant 24 mesothelioma, more education for people to understand that this is not an old man's disease. We need more TV, we need more ad time, and not Participant 2 about the smoking. We need for them to understand what we're going through and what the stigma is like I would say to invest more research in lung cancer. for us. I wish we could put some of those people in That would be the main thing ... The percentage of parliament, in our shoes for a day and have to listen research that goes into lung cancer is pretty crappy to what we have to put up with. Maybe then they really compared to the other cancers, yet it kills more would understand it a bit more, but we need to be a people than any of the other cancers. Participant 20 bit more compassionate about lung cancer. Participant 30 We don't have the financial backing for the research or development to pay for some trials, for instance, to Compassion from the government. I don't have a have availability to those. That's what I would be problem with my treatment and my care. I've not saying is make them a bit more available. Participant been in a situation where I've needed a certain 31 treatment but haven't been able to access it. I don't really have any strong views on that, but they need 297 Lung Cancer 2018 Australian PEEK Study Section 9 help white out the stigma attached to lung cancer and make the funding across the board not specific to individual cancers. Participant 71

Table 9.7: Message to decision-makers Message to decision-makers All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant's message is that there should be equitable funding/more funding for lung cancer 35 43.75 6 35.29 7 41.18 22 47.83 13 38.24 research Participant's message is that there needs to be faster access to therapies for lung cancer through 32 40.00 1 5.88 7 41.18 24 52.17 8 23.53 the PBS

Participant's message is that there is a negative stigma associated with lung cancer and more 27 33.75 4 23.53 7 41.18 16 34.78 11 32.35 awareness is needed to drive compassion and equity Message to decision-makers All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant's message is that there should be equitable funding/more funding for lung 35 43.75 10 45.45 12 50.00 13 38.24 19 45.24 16 42.11 cancer research Participant's message is that there needs to be faster access to therapies for lung cancer 32 40.00 14 63.64 10 41.67 8 23.53 18 42.86 14 36.84 through the PBS Participant's message is that there is a negative stigma associated with lung cancer 27 33.75 9 40.91 7 29.17 11 32.35 14 33.33 13 34.21 and more awareness is needed to drive compassion and equity Message to decision-makers All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant's message is that there should be equitable funding/more funding for lung cancer 35 43.75 21 43.75 14 43.75 15 41.67 20 45.45 research Participant's message is that there needs to be faster access to therapies for lung cancer through 32 40.00 22 45.83 10 31.25 18 50.00 14 31.82 the PBS Participant's message is that there is a negative stigma associated with lung cancer and more 27 33.75 15 31.25 12 37.50 9 25.00 18 40.91 awareness is needed to drive compassion and equity Message to decision-makers All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant's message is that there should be equitable funding/more 35 43.75 30 46.15 5 33.33 15 37.50 20 50.00 25 50.00 10 33.33 funding for lung cancer research Participant's message is that there needs to be faster access to therapies 32 40.00 23 35.38 9 60.00 11 27.50 21 52.50 22 44.00 10 33.33 for lung cancer through the PBS Participant's message is that there is a negative stigma associated with lung 27 33.75 24 36.92 3 20.00 16 40.00 11 27.50 17 34.00 10 33.33 cancer and more awareness is needed to drive compassion and equity

298 Lung Cancer 2018 Australian PEEK Study Section 9

50.00

45.00

40.00

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00 Research funding Faster/better access to therapies Stigma

Figure 9.19: Message to decision-makers

299 Lung Cancer 2018 Australian PEEK Study Section 10 Section 10 Advice to other patients and families

Lung Cancer 2018 Australian PEEK Study Section 10

301 Lung Cancer 2018 Australian PEEK Study Section 10

Advice to patients in the future Find out as much as you can. Just get information. We also found when I had my first meeting with the The most common advice was to become more oncologist, my husband couldn’t come and so then informed about your cancer (n=23; 28.75%) and this we had a follow-up meeting. That’s when I learned was followed by advice to become involved with that I was positive for this targeted treatment. I online groups for people with your specific type of ended up saying to my husband, "You need to get lung cancer (n=16; 20.00%). There were 14 online and just learn as much as possible about this." participants (17.50%) whose advice was seek because we’ve found that that has made information about treatment, including second appointments with the oncologist a lot more opinions, 13 participants (16.25%) whose advice was targeted and a lot better because we seem to have a to ask a lot of questions/ write down questions for much greater knowledge. We’ve got a fairly broad specialists , and 11 participants (13.75%) whose sense of knowledge of what he’s talking about, so advice was to be mindful of your emotions and we’re not wasting a lot of time going through now manage mental health. the basic grassroots information. Participant 57

Participant's advice is to become informed about Participant's advice is to become involved with your cancer support groups for people with your specific type of lung cancer I would, despite how you feel when you first hear about it, I would recommend that they take their I'd say seek as…talk to as many network community. time before they agree to a course of treatment. I Talk to patients in your situation. Participant 4 was suddenly in a real hurry, because I felt that the cancer was spreading and it was…Whereas, if I had taken time after getting some informed advice. I The support of the Facebook page. Then, I do know would say take your time, contact the Lung that there is a support group, a face-to-face group Foundation and talk to them. Definitely talk to the that I've never actually been able to get to because nurse at the Lung Foundation too, [coughs] to get an I've always had something on the day that they overview of what's involved with lung cancer today, meet. Support for people with the same type of as opposed to the information you find on the web. I cancer always helps. Participant 27 think that that would help people be a bit calmer about the diagnosis. Also, then be able to speak to their health professionals with a better context for I think getting into a support group is really, really what lung cancer means and what the options are important because you feel less alone. I didn't know today, including things like clinical trials. Nobody, as anybody my age with lung cancer. I've never heard I said, none of the medical professionals talked to me of it before. I didn't understand how a young person about clinical trials. If they did I didn't hear... Nobody could have lung cancer-- knowing actually there's talked about clinical trials or anything like that. That younger people than me with lung cancer... I think just gives people hope. Hope's really important when that the Facebook group was the most powerful tool. you're first diagnosed. That's what I'd say. I hate to sound like such a word when I say Participant 22 Facebook. [chuckle] Facebook has been just an amazing tool for me for health, despite everybody else's negative responses about Facebook-- They look I think the biggest thing is educate yourself and find at your data and they can be such a negative thing out as much about the lung cancer and what for some people. For me and my health, it was such a treatments there are. Like search the web, Facebook positive tool. Participant 37 groups anything like that and just don’t rely on just your oncologist. They basically have many patients they see each day and like for my type of lung cancer...Yes, it’s just very important the education to yourself and not rely on, just be aware of your doctor think about questions. Participant 35

302 Lung Cancer 2018 Australian PEEK Study Section 10 Participant's advice is to seek information about should get a second opinion, and don't feel treatment, including second opinions embarrassed about it. You're entitled to get a second opinion and there's so much at stake for a lung

cancer patient, possibly offending an oncologist's The advice I always give to people who are newly personal feelings that you are looking for second diagnosed who come to our group is to get that opinion that shouldn't be your concern. Your concern second opinion and do not worry about offending is to look after yourself. Participant 59 your doctor. So many people worry that they're going to offend their doctor if they seek a second opinion, or if they decide they're not getting on with Participant's advice is to ask a lot of questions/write that doctor. This is your life. I'm not saying you have down questions for specialists to be rude, but if you're not getting what you feel is the best care or if you're not clicking with the doctor. I've sacked oncologists because I've told you. You I'd recommend that they ask a lot of questions have to find a doctor that's the person who's got the because otherwise, if you don't ask, then they don't most knowledge, the most expertise, that you're the really tell you what you want to know so yes, just ask most comfortable with because at the end of the anything. It's serious, you might not think it is, just day, you live or die based on what they do. Basically, ask the questions anyway. Participant 7 don't be afraid to get that second opinion and to move on if it's not working. Participant 19 Write down everything you want to know and I really give it to them and ask for copies of everything I would say to get second, third or fourth opinions. you have…every test that you have. Participant 49 Do your own research. Don't just take your doctors advice as Gospel. I would say do whatever you need to do to get wherever you need to go. That's what I'd I think "Ask a lot of questions." Ask as many say. Participant 23 questions as you can early on so you can get an idea. Participant 54

I would say to get at least two opinions if not three...Look for clinical trials as well. I think that I think that the first piece of advice I would give clinical trials is if you haven't got a treatment that's anybody when they're first diagnosed is to ask every going to work for you. Participant 49 question you can possibly think of and persistent until you get an answer and not allow yourself to be fogged off. Participant 60 I would say if you're not comfortable with your care, or if you've got concerns about what's going on, you

303 Lung Cancer 2018 Australian PEEK Study Section 10 Table 10.1: Advice to other patients

Advice to other patients All participants Stage I and II Stage III Stage IV Stage I to III

n=80 % n=17 % n=17 % n=46 % n=34 % Participant's advice is to become informed about your cancer 23 28.75 4 23.53 7 41.18 12 26.09 11 32.35 Participant's advice is to become involved with support groups for people with your specific type 16 20.00 3 17.65 3 17.65 10 21.74 6 17.65 of lung cancer Participant's advice is to seek information about treatment, including second opinions 14 17.50 0 0.00 6 35.29 8 17.39 6 17.65 Participant's advice is to ask a lot of questions/ 13 16.25 2 11.76 2 11.76 9 19.57 4 11.76 write down questions for specialists Participant's advice is to be mindful of your emotions and manage mental health 11 13.75 3 17.65 1 5.88 7 15.22 4 11.76 Participant's advice is to have a positive outlook 9 11.25 4 23.53 0 0.00 5 10.87 4 11.76 Participant's advice is to seek information about diet and exercise during treatment 7 8.75 2 11.76 0 0.00 5 10.87 2 5.88 Participant's advice about practical aspects of coping with lung cancer/treatment 7 8.75 1 5.88 1 5.88 5 10.87 2 5.88 Participant's advice is to take someone to 6 7.50 0 0.00 1 5.88 5 10.87 1 2.94 appointments/ take notes

Advice to other patients All participants Brain metastases Other metastases No distant Better Worse metastases energy/fatigue energy/fatigue

n=80 % n=22 % n=24 % n=34 % n=42 % n=38 % Participant's advice is to become informed about your cancer 23 28.75 6 27.27 6 25.00 11 32.35 11 26.19 12 31.58 Participant's advice is to become involved with support groups for people with your 16 20.00 7 31.82 3 12.50 6 17.65 11 26.19 5 13.16 specific type of lung cancer Participant's advice is to seek information about treatment, including second opinions 14 17.50 3 13.64 5 20.83 6 17.65 9 21.43 5 13.16 Participant's advice is to ask a lot of questions/ write down questions for 13 16.25 4 18.18 5 20.83 4 11.76 7 16.67 6 15.79 specialists Participant's advice is to be mindful of your emotions and manage mental health 11 13.75 2 9.09 5 20.83 4 11.76 4 9.52 7 18.42

Participant's advice is to have a positive 9 11.25 2 9.09 3 12.50 4 11.76 5 11.90 4 10.53 outlook Participant's advice is to seek information about diet and exercise during treatment 7 8.75 4 18.18 1 4.17 2 5.88 3 7.14 4 10.53 Participant's advice about practical aspects of coping with lung cancer/treatment 7 8.75 3 13.64 2 8.33 2 5.88 5 11.90 2 5.26

Participant's advice is to take someone to 6 7.50 2 9.09 3 12.50 1 2.94 2 4.76 4 10.53 appointments/ take notes

304 Lung Cancer 2018 Australian PEEK Study Section 10

Advice to other patients All participants Less pain More pain Older (55 and older) Younger (18 to 54)

n=80 % n=48 % n=32 % n=36 % n=44 % Participant's advice is to become informed about your cancer 23 28.75 15 31.25 8 25.00 12 33.33 11 25.00 Participant's advice is to become involved with support groups for people with your specific type 16 20.00 12 25.00 4 12.50 5 13.89 11 25.00 of lung cancer Participant's advice is to seek information about treatment, including second opinions 14 17.50 12 25.00 2 6.25 6 16.67 8 18.18 Participant's advice is to ask a lot of questions/ 13 16.25 4 8.33 9 28.13 8 22.22 5 11.36 write down questions for specialists Participant's advice is to be mindful of your emotions and manage mental health 11 13.75 7 14.58 4 12.50 7 19.44 4 9.09 Participant's advice is to have a positive outlook 9 11.25 7 14.58 2 6.25 7 19.44 2 4.55 Participant's advice is to seek information about diet and exercise during treatment 7 8.75 4 8.33 3 9.38 2 5.56 5 11.36 Participant's advice about practical aspects of coping with lung cancer/treatment 7 8.75 4 8.33 3 9.38 2 5.56 5 11.36 Participant's advice is to take someone to 6 7.50 2 4.17 4 12.50 3 8.33 3 6.82 appointments/ take notes Table 10.1: Advice to other patients

Advice to other patients All participants Metropolitan Regional or Trade or high University High SEIFA Mid to low remote school SEIFA

n=80 % n=65 % n=15 % n=40 % n=40 % n=50 % n=30 % Participant's advice is to become informed about your cancer 23 28.75 19 29.23 4 26.67 11 27.50 12 30.00 15 30.00 8 26.67 Participant's advice is to become involved with support groups for people with your specific type of lung 16 20.00 15 23.08 1 6.67 9 22.50 7 17.50 11 22.00 5 16.67 cancer Participant's advice is to seek information about treatment, including 14 17.50 12 18.46 2 13.33 6 15.00 8 20.00 11 22.00 3 10.00 second opinions Participant's advice is to ask a lot of questions/ write down questions for 13 16.25 10 15.38 3 20.00 6 15.00 7 17.50 9 18.00 4 13.33 specialists Participant's advice is to be mindful of your emotions and manage mental 11 13.75 8 12.31 3 20.00 7 17.50 4 10.00 4 8.00 7 23.33 health

Participant's advice is to have a 9 11.25 7 10.77 2 13.33 5 12.50 4 10.00 5 10.00 4 13.33 positive outlook Participant's advice is to seek information about diet and exercise 7 8.75 5 7.69 2 13.33 5 12.50 2 5.00 2 4.00 5 16.67 during treatment Participant's advice about practical aspects of coping with lung 7 8.75 5 7.69 2 13.33 3 7.50 4 10.00 5 10.00 2 6.67 cancer/treatment

Participant's advice is to take someone 6 7.50 5 7.69 1 6.67 2 5.00 4 10.00 5 10.00 1 3.33 to appointments/ take notes

305 Lung Cancer 2018 Australian PEEK Study Section 10

35.00

30.00

25.00

20.00

15.00

10.00

5.00

0.00 Become informed, but Connect with Tr eatm ent Ask questions Attitudes/emotions Positive outlook Healthy Practical tips Take someone to Google has its limits support/online groups options/second about lung cancer diet/lifestyle/exercise appointments/ take opinions/clinical trials info notes

Figure 10.1: Advice to other patients

306 Lung Cancer 2018 Australian PEEK Study Section 11 Section 11 Discussion

Lung Cancer 2019 Australian PEEK Study Section 11 Introduction participants with a high school or trade education compared with a university education and at ratio of Lung cancer is the fourth most diagnosed cancer in 5:3 in relation to participants from a higher Australia for both men and women1, in 2015, it was socioeconomic group compared to a lower socio- the fourth most common cause of death and the most economic group. There were also more from common cause of cancer deaths2. There were over metropolitan areas, and the majority of participants 11,000 new cases of lung cancer in 2013, with more were under 54. Participants were included from all men (approximately 6,600) than women stages of lung cancer, with half of all participants (approximately 4,500) diagnosed3. In 2014, more having stage IV lung cancer. These demographics than 8000 people in Australia died from lung cancer, should always be taken into consideration when nearly 5000 of these deaths were in men3. The interpreting the results of this study. survival rates from lung cancer are low, with less than half (41.6%) of those diagnosed surviving for one- Symptoms, risk and diagnosis year, and less than 1 in 6 surviving for five years3. The survival rates are higher in women compared to men, The risk factors for lung cancer include smoking younger people compared to older people, non- tobacco, alcohol consumption, workplace or indigenous compared to indigenous, major cities occupational exposure, ionising radiation, air compared to very remote locations, and those in the pollution, passive smoking, family history of lung highest socioeconomic group compared to those in cancer, lung disease and medical/pharmaceutical the lowest3. medicines1,4. Symptoms of lung cancer include persistent cough, coughing up blood (hemoptysis), Lung cancer has the greatest cancer burden, and it is chest pain, unexplained weight-loss, loss of appetite, the second most common reason for radiotherapy for shortness of breath, fatigue, ongoing chest infections, both men and women (after prostate and breast and some patients will present with symptoms from cancers respectively), and it is the second most metastatic disease such as bone pain, jaundice or common type of cancer for palliative care (14%) after abdominal pain5,6,10. The most common symptoms secondary site3. for participants in this PEEK study were shoulder or back pain, tired/low energy levels, shortness of There are two main types of lung cancer, small cell breath, coughing or spitting up blood, and a new lung cancer (SCLC) and non small cell lung cancer cough that does not go away (NSCLC), the majority are NSCLC (85%)7. NSCLC can further be divided into adenocarcinoma, squamous- A study of risks and symptoms knowledge of smokers cell carcinoma, and large-cell carcinoma, the most and non-smokers in NSW identified current smokers common from is adenocarcinoma (about 40%)8. deny their risks and former smokers are unaware of their ongoing risk11. Hemoptysis and dyspnoea were NSCLC can is divided into 6 stages based on size of most recognised symptoms of lung cancer and tumour and where the cancer has spread to:9 awareness was greater in women and those in a • Occult (hidden) stage, cancer cells are higher socioeconomic group11. While smoking is detected in fluids but not in any other tests. known as a risk factor, smokers were less likely to • Stage 0 tumours are non-invasive cancer that recognise passive smoking as a risk factor11. is confined to inner lining of lungs • Stage I tumours are small and have not In 2015, the National Cancer Expert Reference Group spread to lymph nodes or any other organs. developed the Optimal care pathway for people with • Stage II tumours are may be large or have lung cancer6. There are no screening programs that spread to lymph nodes have been found to improve lung cancer outcomes6. • Stage III tumours may be large, locally Presentation of lung cancer symptoms that have advanced, or have spread to lymph nodes but persisted for more than three weeks, or symptoms in not to distant sites individuals with known risk factors should have a • Stage IV tumours, the cancer has spread to chest x-ray, if lung cancer is suspected, patient is either the other lung, the space around the referred to an expert multi-disciplinary team6. If x-ray lungs or heart, or distant sites. is clear and symptoms persist this should be followed up with a CT and if lung cancer suspected referral to In this PEEK study, despite more men being diagnosed specialist multi-disciplinary team. 6 with lung cancer, more women than men participated. There was an even number of 308 Lung Cancer 2019 Australian PEEK Study Section 11 For patients that present with persistent hemoptysis, income, lower education, males, and high and/or signs of vena cava obstruction, and those that comorbidities were associated with less treatment of cough up large volumes of blood exceeding 300mL lung cancer18,19. with or without stridor should be immediately referred to specialist multi-disciplinary team6. All The National Cancer Expert Reference Group of patients should be seen by specialist within two Australia, recommend that treatment planning be weeks of referral6. discussed by a MDT, and that clinical trials should be considered if available and appropriate 6. The intent The most common symptoms leading to diagnosis in of treatment must be established, whether curative, this PEEK study was breathing difficulties, including to improve quality of life without expectation of cure, shortness of breath, a persistent cough, and having a or symptom control 6. Surgery is if offered for pain in their back. However, more than 10% of this diagnostic purposes, for curative intent in early NSCLC PEEK study population had no symptoms before being and for later stages palliative symptom control 6. diagnosed. Radiotherapy which may be in combination with systemic therapies may be offered for NSCLC that are Diagnosis of lung cancer is usually confirmed by not suitable for surgery, radiation may also be offered bronchoscopy, this may be achieved by bronchoscopy for palliative care. 6 endobronchial ultrasound (EBUS), CT-guided biopsy, excisional biopsy of lung or biopsy of metastasis. It is The National Institute for Health and Clinical rarely diagnosed by sputum cytology6. Excellence (NICE) recommend Chemotherapy be offered to all stage III and IV patients with good The participants of this PEEK study had between and performance status20. Both NICE and Cancer Council five diagnostic tests, most commonly three diagnostic Australia recommend advanced NSCLC patients be tests. The most common tests were CT scans, biopsy, offered combination platinum therapy using cisplatin consistent with national guidelines, in addition, many or carboplatin with a third generation agent such as participants had PET scans and chest x-rays as part of docetaxel, gemcitabine, paclitaxel, or vinorlbine20,21. their diagnostic tests. When platinum combination therapy is not tolerated, single agent third generation chemotherapy and Treatment docetaxel monotherapy can be considered for second Lung cancer has the greatest disease burden of all line treatment20,21. First line combination therapy cancer types. It is the second most common reason should stop at disease progression or after four cycles for radiotherapy for both men and women (after for advanced disease20,21. First line maintenance prostate and breast cancers respectively), and it is the therapy – premextrexed in stage IV non-squamous second most common type of cancer for palliative cell, and for patients with stable or responsive care (14%) after secondary site3. advanced disease switch maintenance therapy to an alternative chemotherapy agent is recommended to Lung cancer is often diagnosed at advanced stages, in delay tumour progression20,21. NSW during the period 1995 to 2004, half of lung cancers were locally advanced or had spread to NICE recommend Cisplatin with premetrexed is distant locations at the time of diagnosis1. Studies in recommended for squamous cell disease21. Erlobitib America report that up to 70% of NSCLC is diagnosed may be offered to patients with poor performance at advanced stages, and that almost a quarter of these status or for selected patients monotherapy with are never treated12,13. Lung cancer is often not third generation chemotherapy agents for symptom treated due to co-morbidities, the burden of which is improvement and possible survival improvement21. greater and is associated with the high prevalence of smoking compared to other types of cancer14-17. The Targeted therapies may be used as second line most common co-morbidities for people with lung treatment in lung cancer. Erlotinib, Gefitinib, and cancer are chronic obstructive pulmonary disease, Afatinib target the epidermal growth factor receptor coronary artery disease, chronic heart failure, tyrosine kinase (EGFR - TK) mutation positive are diabetes, and kidney failure14-16. In a large review of suitable for locally advanced and metastatic NSCLC. medical records of patients with NSCLC, Rios et al18 Crizotinib, cerltinib and alectinib target ALK gene in reported that the proportion of patients that did not ALK-rearranged NSCLC patients 22. receive any treatment increased with stage from about 9% of stage I to 24% of stage IV. Older age, Common side effects from chemotherapy given to advanced disease, rural location, lower household lung cancer patients are nausea/vomiting, loss of 309 Lung Cancer 2019 Australian PEEK Study Section 11 appetite, weight loss, fatigue, low resistance to mutation 33,34. The ALK translocation are susceptible infections, bleeding or bruising, diarrhea or to a ALK-targeted therapies such as crizotinib, constipation, and hair loss23. Radiotherapy has short cerltinib and alectinib 26,35. term side effects of fatigue, nausea/vomiting, changes to skin, sore throat and mouth, difficulty Mutations in KRAS (Kirsten rat sarcoma viral swallowing, breathlessness and cough and loss of hair oncogene) are the most common mutations found, in region of radiotherapy23. Long term side effects of these are mostly in adenocarcinomas and in more radiotherapy include cough and breathlessness, smokers compared to those that have never smoked narrowing of oesophagus, pericarditis, and damage to and does not occur with the EGFR mutation 36-39. The spinal cord23. KRAS mutation is associated with poor prognosis, and predicts resistance to EGFR-inhibitors and In this PEEK study, all participants had some form of chemotherapy 38-40. High expression of ERCC1 protein treatment for their lung cancer. Chemotherapy, (enzyme excision repair cross complementation surgery and immunotherapy were most frequently group 1) is associated with poor prognosis and given, with slightly fewer participants having had predicts resistance to platinum therapy 41,42, and low radiotherapy. Participants reported better quality of expression of RRM1 (ribonucleotide reductase life on immunotherapy and worst quality of life from catalytic subunit M1) is associated with good surgery, all forms of treatment were reported as prognosis with gemcitabine/platinum therapy41. High effective with radiotherapy being slightly less expression of TS (thymidylate synthase) is associated effective than the other forms of treatment. Fatigue with a poor response to chemotherapy drugs such as was commonly reported as a side effect of all flurouracil 43. treatments, in addition pain was reported commonly for surgery, “chemo brain” for chemotherapy, diarrhoea for immunotherapy and skin dryness for In this PEEK study, the majority of participants radiotherapy. indicated that they did not have any discussions with healthcare professionals about genetic tests or Biomarkers biomarkers relevant to their lung cancer or treatment for lung cancer. Almost all participants wanted to The use of biomarkers in the treatment planning of have this type of testing if they had not already had it. lung cancer has three main objectives, to differentiate Participants identified that they had biomarkers for between histological types, to determine therapeutic ALK, EGFR or ROSI. Of the participants that described outcomes and to predict treatment outcomes 24-26. having a particular biomarker, seven had responded a However, pathologists are advised to use the minimal question about genetic testing/biomarkers that “I number of markers to preserve tissue for molecular have not had this test but would like to” and six of testing and potentially avoid the need for repeat these had responded that “No one has ever spoken to biopsies 26. The Royal college of Pathologists me about this type of test”. This perhaps indicates a Australasia report that TTF-1, Napsin A, CK5/6 and lack of adequate communication about tests p63 are among the most reliable markers for conducted and the meaning of test results between distinguishing between squamous cell carcinoma and patient and healthcare provider. adenocarcinoma, which has treatment implications 26- 28. The profile of thyroid transcription factor-1 (TTF- CLINICAL TRIALS 1), cytokeratin 7 and 20 (CK7 and CK20) can distinguish between primary and metastatic lung 29. A search of the ANZCTR for clinical trials for people diagnosed with NSCLC open to recruitment (search The most common mutations of NSCLC that have date 6/12/2018) identified 60 clinical trials for therapeutic implications are the epidermal growth between 20and 1350 participants. There were 10 factor receptor (EGFR) mutation and ALK (anaplastic studies where Stage I and Stage II NSCLC eligible to lymphoma kinase) translocation 30. The EGFR participate, 23 for Stage III and 20 for Stage IV. There mutation occurs in a small subset of patients, it is were eight studies that were open to any lung susceptible to EGFR tyrosine kinase inhibitors (EGFR- cancers, and 20 studies that were open to multiple TKIs) such as erlotinib, gefitinib and afatininb 31,32. The cancer types that included NSCLC. The majority of ALK translocation also occurs in a small subset of studies were clinical trials of drugs, six studies those diagnosed with adenocarcinoma, usually in investigated radiotherapy, five were imaging studies, those that had never smoked or were light smokers, four investigated treatment pathways, three in addition, it usually does not occur with the EGFR diagnostic methods and two pf complementary 310 Lung Cancer 2019 Australian PEEK Study Section 11 therapies. The trials were conducted across all states exercise may improve cardiorespiratory function and and territories of Australia, with 37 in NSW, 28 in functional capacity, acupuncture may alleviate Queensland, 25 in Victoria, 15 in Western Australia, nausea and vomiting, pain and peripheral 11 in South Australia, six in the Australian Capital neuropathy. High calorie and high protein dietary Territory, four in Tasmania and one in the Northern supplementations may help with weight loss and n-3 Territory. fatty acid supplementations may help with sarcopenia44. In this PEEK study, two thirds of participants had a discussion about clinical trials with their doctor, either Quality of life prompting the discussion themselves or for almost half the participants, their doctor bringing up the Quality of life in lung cancer is affected by a number topic. Almost a third took part in a clinical trial, and of of factors including physical symptoms, psychological those that didn’t most of the participants would like distress and stigma 49,50. People with lung cancer to take part in a clinical trial if a suitable one was experience poorer quality of life compared to other available. For those that took part in a clinical trial for cancers, this may be due to the number and severity lung cancer, the quality of life was reported in the life of symptoms associated with the disease and was average range, while the effectiveness was rated treatments 51-53. The most frequently reported in the effective range. From the structured symptoms and side effects that have an effect on interviews, those that commented on taking part in quality of life are fatigue, loss of appetite, pain, blood clinical trials expressed mostly positive views on the in sputum, dyspnoea, cough, and respiratory experience. problems 53.

Complementary therapies Participants described their side effects as either mild, Complementary therapies are those that have an those that did not impact activities of daily living, the evidence base of alleviating symptoms, improving most common mild side effect reported was nausea quality of life and potentially improving compliance to followed by fatigue, itches or rash and diarrhea. treatments, these include meditation, hypnosis, Severe side effects were described as those that massage therapy, exercise therapy, acupuncture, and impact activities of everyday living, most commonly diet and nutrition 44. Use of complementary therapies the severe side effects were fatigue/exhaustion is poorly documented, however, reports from the nausea or vomiting. literature indicate that between 50 and 60% of lung cancer patients use complementary therapies, the Fatigue and respiratory problems impact most common types reported are vitamins, herbs, psychological quality of life, sleep problems impact special diets, relaxation techniques, meditation, cognitive aspects, and physical abilities decrease over prayer and physical exercise 45-47. the course of the disease that impact occupation, family and societal roles54. Fatigue is commonly reported as the most severe side effect, and that it In this PEEK study, the most common complementary reduces quality of life more than pain, in addition, therapies reported were taking vitamins and fatigue can interrupt or reduce the amount of supplements, following a specific diet and seeing a treatment received50,55. naturopath. A quarter of participants described not using complementary therapies. Participants in this PEEK study that scored less than average on the SF36 energy/fatigue score, had worse The use of complementary therapies gave greater scores for all other SF36 domains (physical function, perceived control over treating disease45. The role limitations due to physical function, role symptoms most commonly alleviated by limitations due to emotional problems, emotional complementary therapies have been reported to be well-being, social functioning, pain, general health pain, fatigue and shortness of breath48. A systematic and health change) A similar pattern was seen for review of complementary therapies recommended participants that scored less than average in the SF36 that mind body modalities such as meditation, Pain scale, where all domains except for emotional hypnosis, guided imagery, yoga and tai chi may well being were significantly worse than those that reduce anxiety, sleep disturbances, mood scored higher in the SF36 pain scale, disturbances, pain, fatigue, nausea and vomiting, and may improve quality of life and improve mood44. A review of supportive care96, a nurse led coaching Massage therapy may improve anxiety and pain, study compared to usual care showed benefits in 311 Lung Cancer 2019 Australian PEEK Study Section 11 breathlessness, fatigue and anxiety97 . Another study burden of lung cancer on them and their family. of phone delivered education compared to phone Participants described a reduction in income from delivered coping skills for carers, both interventions reduced employment of either the lung cancer showed benefits in both patient and carer depression participant or their family, paying additional money and self-efficacy98. for carers for either the lung cancer patient or their family, and from the costs of additional spending due More chemotherapy is associated with poorer quality to lung cancer. of life, especially in older patients who experience more problems with societal and occupational roles, Home based follow up care delivered by with nurses, while younger people have poorer psychological or a multi-disciplinary team was compared to clinic function during chemotherapy50. based physician follow up, those receiving home care follow had less distress, however they perceived their Lung cancer patients have been shown to have higher health to be poorer99. Another study compared nurse levels of psychological distress than in any other led follow up with standard care, the nurse led care cancer, there is a negative relationship between was available weekdays via a clinic, telephone or quality of life and anxiety, depression and pager service98. Patients in the nurse led group has stigma50,56,57. Anxiety has been shown to increase less severe dyspnea, better emotional function, less during chemotherapy and while it drops on peripheral neuropathy and had improved satisfaction completion of treatment it does not return to pre- with the organisation of care, information, education treatment levels 49. Stigma of lung cancer contributes and personal experience98. The nurse led group also greatly to high levels of stress, this stigma has been had fewer medical consultations, were more likely to reported from the clinical setting to family and friends have radiotherapy and were more likely to have died 58,59. at home98.

The participants in this PEEK study scored in the Home based treatment was discussed by participants middle of the Fear of Progression questionnaire, in this PEEK study as a means of improving quality of indicating a moderate amount of anxiety. The life during treatment. The majority of participants participants of this PEEK study most commonly described a preference for taking a pill at home and in described a negative impact of lung cancer on their contrast, however there were some who described a quality of life, common themes described this as due preference for chemotherapy in hospital, the main to the emotional and physical impact of lung cancer. reason was for monitoring and testing For those that However, Participants described activities to maintain described a preference for a pill at home, the main mental health, most often by accessing a mental reasons were the reduced impact on everyday living health professional, others described coping ease of administration and because hospitals tend to strategies, mindfulness or meditation. be depressing. For those that preferred to have treatment at home, many described needing Caregivers to lung cancer patients need to manage someone to call on the telephone who is available and lung cancer symptoms, nutrition and psychological responsive at all times, others want access to their burdens of the patient in particular anxiety and oncologist. Some participants described concern depression60,61. The burden placed on caregivers is about side effects, and others were confident to take increased with disease progression as the symptoms medication at home. increase and patient self-management decreases50,62. A Cochrane review concluded that nurse led follow up programmes may be beneficial in managing Participants in the PEEK study spoke about the effect breathlessness105. The evidence for counselling on that their lung cancer diagnosis had on their coping is not conclusive, other psychotherapeutic, relationships, some described positive changes, psychosocial and educational interventions may where relationships were strengthened, others improve quality of life, however, exercise negative such as friends dropping away. Some programmes and nutritional interventions have not described their lung cancer as an additional burden shown lasting benefits to quality of life105. on family was due to the extra duties or responsibilities their family members have had to take on, and some expressed the burden as due to the mental/emotional strain it places on their family. Participants in this PEEK study also describe a financial 312 Lung Cancer 2019 Australian PEEK Study Section 11 Health professional communication/decision- not always agree with guidelines and current making recommendations72,73,79. However, communication between doctor and patient may be lacking, Chu et al The values most often considered when making (2007) reported that following a consultation the treatment decisions varies between patient and patients understanding of benefits and toxicity of physician63. Physicians may emphasise the toxicity treatment differed from that of the physician68. Other and symptoms from disease and treatments, they are factors that influence patient decision making include influenced by age, function, comorbidities and age, having dependent children, previous experience metastatic status64. This is in contrast to reports of of illness, previous experience of chemotherapy, patient preferences, studies of lung cancer treatment those that have not had chemotherapy tend to preferences identified that patients generally value underestimate the severity of side effects, health longevity over side effects and quality of life65-68, even literacy, and function80. with longer treatment duration or worse side effects over shorter treatment with better symptom Participants described the communication that they control68,69. However, other studies have reported had had with health professionals throughout their that patients have equal preferences for health experience. The most common theme was that related quality of life, longevity, and that there are participants described having an overall positive some sub groups, including older people and males experience. Reasons for a positive experience that have a preference for health related quality of included; health professionals taking time to answer life over longevity70,71. It is reported that physicians questions, health professionals being caring and have least value in systemic treatment for symptom supportive, and health professionals explaining relief for metastatic disease and may recommend treatment options/new treatments and/or research supportive care72,73, despite demonstrated benefits63, coming through. Some participants described an in contrast, metastatic patients are more likely to overall negative experience. This related to having judge chemotherapy worth-while for smaller benefits enough support or time provided by health compared to those with locally advanced disease74. professionals to help understand information presented and health professionals being insensitive Nearly all the participants of this PEEK study valued the access of treatments that reduce symptoms and Support and psychosocial care - Information and improve quality of life even if the treatment does not Education offer a cure. The most important symptoms and aspects of quality of life that they wanted controlled The high symptom burden of people with inoperable were pain, nausea and vomiting, and diarrhea; the lung cancer and a lack of sufficient supportive care are least important were mouth ulcers, and hair loss. associated with increased psychological distress and poor ability to conduct daily activities81. Patients with The patients’ role in decision making can be described advanced lung cancer have expressed concerns about as passive, active or shared. Two studies have future illness, being a burden, reduced physical reported that decision making is shared more often function and social isolation82,83. Families and carers between patient and physician compared to active or reported increased isolation and unsatisfactory passive75,76. However, another study found that support as disability of lung cancer patient decision making was more often passive than shared increased84, poorer carer health predicted patient or active, and that those with lower education or distress, and increased disruption to carer predicted those that had more regular contact with doctors in financial strain84. Rehabilitation interventions such as general preferred an active role77,78. physiotherapy, occupational therapy, diet and speech therapy, may assist advanced lung cancer patients in In this PEEK study, the participants common themes symptom control and may allow prolonged about treatment decision making included independence and physical function, minimising considering the side effects of treatment, burden on carers and family81,85-87. efficacy/evidence of treatment, quality of life, following the advice of their clinician, and longevity. Participants in this study most frequently described receiving care and support from family and friends Physician perception knowledge and This was followed by receiving support through recommendations do have an impact on patient charities, support through clinical trials, support decisions, there is a wide variation on physician groups, and support through online portals including opinion about treatment and likely outcomes that do Facebook . 313 Lung Cancer 2019 Australian PEEK Study Section 11 old information and “Dr Google”. The preferences of A number of studies published in the last five years information format were described as a preference have reported the informational needs of lung cancer for talking to a healthcare professional with or patients and their carers. Most commonly reported without written information, online information, and by study is lack information about managing apps (complementary to other methods). symptoms, in particular fatigue, shortness of breath and cough88-90. There is a preference for verbal Timing of information was also described as information from doctors that is honest and jargon- important. Participants described different time free, which is supplemented by written information points through their diagnosis and treatment when to take home91,92. A lack of information about post- they are most receptive to information. Some operative care once discharge from hospital was described being receptive to receiving information reported, but overall, the majority felt they had was at the time of diagnosis, others being receptive enough information about the disease, with some to information following the shock of diagnosis. There reporting they had too much93. More information was participants that described not being receptive to associated with an increased uptake of cancer information for months after diagnosis and other treatments94. With regards to genetic screening, lung participants that described being receptive to cancer patients reported interest in results but want information continuously throughout their to focus on information that is relevant to treatment. experience. This highlights the need for ongoing Information overload was reported by some as a communication and information between patient and barrier to undertaking genetic testing91. Unmet healthcare professional throughout the patients information needs of people with lung care has been treatment and follow up. reported to reduce as disease progresses95. Summary: Characterisation of the study population In this PEEK study, participants described the information accessed, the format of access and In this PEEK study, more women than men preferences for information. Of information given to participated. There was an even number of participants by healthcare professionals, Information participants with a high school or trade education about treatment options, psychological/social compared with a university education and at ratio of support, and disease management were most 5:3 in relation to participants from a higher frequently given to participants by healthcare socioeconomic group compared to a lower socio- professionals. Information about complimentary economic group. There were also more from therapies , and interpreting test results were give metropolitan areas, and the majority of participants least often. After information was given to them, were under 54. Participants were included from all participants most frequently then went on to search stages of lung cancer, with half of all participants for information about complementary therapies, having stage IV lung cancer. These demographics disease management, and treatment options. The should always be taken into consideration when least searched for topic was hereditary considerations interpreting the results of this study. genes or genomic biomarker information. The largest gaps in information, where information was neither The most common symptoms that lead participants in given to patients nor searched for independently this study to seek a diagnosis was breathing were how to interpret test results and hereditary difficulties, a persistent cough, and having a pain in considerations genes or genomic biomarker their back. However, more than 10% of this PEEK information . study population had no symptoms before being diagnosed. Participants in this PEEK study accessed most of their information from Australian charities, online forums, the internet, face to face support groups, and medical More than half of the participants were diagnosed journals. Participants found information that was within 6 months of noticing symptoms, however useful came from talking their doctor/specialist , from there were still some participants that had more than charities, support groups or patient information a year from noticing symptoms until diagnosis. Most days), online support groups and information that is participants either had no support or not enough specific to the type of lung cancer they have . support at diagnosis. Information that was not helpful included information that was not relevant and was not The participants had a range of treatments, including credible, survival statistics, other peoples opinions, surgery, chemotherapy, immunotherapy and 314 Lung Cancer 2019 Australian PEEK Study Section 11 radiation. For participants to know that their effects. Participants would like to see future lung treatment was working, they needed to see evidence cancer education that addresses the stigma of lung of stable disease or a reduction in disease, or a cancer, and to educate the public in relation to the reduction in side effects. causes of lung cancer. Participants wanted professionals to be more forthcoming with Almost a third of participants had taken part in a information, wanting to know more about tumour clinical trial for lung cancer, and more participants biomarkers and/or sub-types of lung cancer, and had discussions about clinical trials than participants wanting to know more about current and emerging that did not. treatments, specific to various types of lung cancer.

The most common themes in treatment decision The most common recommendation for future care making were considering the side effects of and support was for more support groups and treatment, considering efficacy/evidence of the support from charities, and this was followed by treatment and quality of life. Less frequently, improved funding for staff involved in treating lung participant described primarily following the advice of cancer, specifically lung cancer nurses. their clinician. The participants in this study described being grateful Participants in this PEEK study accessed most of their for access to treatment through Medicare and being information from Australian charities, online forums, grateful for the entire health system. the internet, face to face support groups, and medical journals. The preferences of information format were Finally, was study population that felt that more described as talking to a healthcare professional with equitable research and support services are needed, or without written information, online information, and importantly, ask the community to have and apps (complementary to other methods). compassion and empathy for those that have been diagnosed with lung cancer. Participants described that lung cancer had a negative impact on quality of life, this was mostly attributed to the emotional and physical impact of lung cancer including a reduced capacity for physical activity. Lung cancer had both a positive and negative effect on relationships, some participants describe strengthening relationships while others describe losing friends. Participants felt that their lung cancer created an additional burden to family due to extra responsibilities and mental/emotional strain.

Care and support was primarily received from family and friends. Overall, participant reported having good communication with healthcare professionals, however there were gaps in information in relation to specific types of lung cancer and also, knowing where to go for information in a timely manner. There were also often variations in tumour stage sub-groups in relation to patient experience and expectations across a number of domains.

The majority of participants in this study spoke about the negative impact on quality of life that lung cancer has had on their family and friends, and the ongoing stigma attached to the disease.

In the future, this cohort of patients would like to see affordable treatment that had equitable access, in addition, they would like to see more targeted therapies particularly to reduce the impact of side 315 Lung Cancer 2019 Australian PEEK Study Section 11 References patients with stages III and IV non-small-cell lung 1. Australian Institute of Health and Welfare cancer. J Oncol Pract 2013; 9(1): 42-50. & Cancer Australia 2011. Lung cancer in Australia: 14. Grose D, Devereux G, Milroy R. an overview. Cancer series no. 64. Cat. no. CAN Comorbidity in lung cancer: important but 58. Canberra: AIHW. neglected. a review of the current literature. Clin 2. Australian Bureau of Statistics 2016, Lung Cancer 2011; 12(4): 207-11. Causes of Death, Australia, 2015. 'Table 1: 15. Islam KM, Jiang X, Anggondowati T, Lin G, Underlying causes of death (Australia), data Ganti AK. Comorbidity and Survival in Lung cube: Excel spreadsheet, cat. no. 3303.0, viewed Cancer Patients. Cancer Epidemiol Biomarkers 19 March 2018, Prev 2015; 24(7): 1079-85. http://www.abs.gov.au/AUSSTATS/[email protected]/Lo 16. Tammemagi CM, Neslund-Dudas C, okup/3303.0Main+Features100012015?OpenDo Simoff M, Kvale P. Impact of comorbidity on lung cument. cancer survival. Int J Cancer 2003; 103(6): 792- 3. Australian Institute of Health and Welfare 802. 2017. Cancer in Australia 2017. Cancer series 17. Edwards BK, Noone AM, Mariotto AB, et no.101. Cat. no. CAN 100. Canberra: AIHW. al. Annual Report to the Nation on the status of 4. IARC 2014. World cancer report 2014. cancer, 1975-2010, featuring prevalence of Lyon, France: IARC. comorbidity and impact on survival among 5. Travis W.D. BE, Muller-Hermelink H.K., persons with lung, colorectal, breast, or prostate Harris C.C. (Eds.). World Health Organization cancer. Cancer 2014; 120(9): 1290-314. Classification of Tumours. Pathology and 18. Rios J, Gosain R, Goulart BH, et al. Genetics of Tumours of the Lung, Pleura, Thymus Treatment and outcomes of non-small-cell lung and Heart. IARC Press: Lyon 2004. 2004. cancer patients with high comorbidity. Cancer 6. National Cancer Expert Reference Group. Manag Res 2018; 10: 167-75. Optimal care pathway for people with lung 19. Nilssen Y, Strand TE, Fjellbirkeland L, et al. cancer. 2015. Lung cancer treatment is influenced by income, 7. Zappa C, Mousa SA. Non-small cell lung education, age and place of residence in a cancer: current treatment and future advances. country with universal health coverage. Int J Transl Lung Cancer Res 2016; 5(3): 288-300. Cancer 2016; 138(6): 1350-60. 8. Sher T, Dy GK, Adjei AA. Small cell lung 20. National Institute for Health and Clinical cancer. Mayo Clin Proc 2008; 83(3): 355-67. Excellence (2011). Lung cancer: diagnosis and 9. American Joint Committee on Cancer management. NICE guideline (CG121). (2010). AJCC Cancer Staging Manual Seventh 21. Cancer Council Australia Lung Cancer Edition. Chiago. Guidelines Working Party. [Version URL: 10. Iyer S, Taylor-Stokes G, Roughley A. https://wiki.cancer.org.au/australiawiki/index.p Symptom burden and quality of life in advanced hp?oldid=166829, cited 2018 Mar 6]. Available non-small cell lung cancer patients in France and from Germany. Lung Cancer 2013; 81(2): 288-93. https://wiki.cancer.org.au/australia/Guidelines:L ung_cancer/Treatment/Non_small- 11. Crane M, Scott N, O'Hara BJ, et al. cell/Summary_of_recommendations. In: Cancer Knowledge of the signs and symptoms and risk Council Australia Lung Cancer Guidelines factors of lung cancer in Australia: mixed Working Party. Clinical practice guidelines for the methods study. BMC Public Health 2016; 16: 508. treatment of lung cancer. Sydney: Cancer Council 12. Small AC, Tsao CK, Moshier EL, et al. Australia. Available from: Prevalence and characteristics of patients with https://wiki.cancer.org.au/australia/Guidelines:L metastatic cancer who receive no anticancer ung_cancer. therapy. Cancer 2012; 118(23): 5947-54. 22. Cancer council NSW ((n.d.). Targeted 13. Goulart BH, Reyes CM, Fedorenko CR, et therapy for lung cancer. Acessed on 13/09/2018 al. Referral and treatment patterns among 316 Lung Cancer 2019 Australian PEEK Study Section 11 from https://www.cancercouncil.com.au/lung- 32. Pao W, Miller V, Zakowski M, et al. EGF cancer/advanced-cancer/targeted-therapy/. receptor gene mutations are common in lung 23. Cancer Research United Kingdom. Lung cancers from "never smokers" and are associated Cancer Treatment. [Version URL: http://about- with sensitivity of tumors to gefitinib and cancer.cancerresearchuk.org/about- erlotinib. Proc Natl Acad Sci U S A 2004; 101(36): cancer/lung-cancer/treatment cited 2018 Apr 13306-11. 10]. 33. Lindeman NI, Cagle PT, Beasley MB, et al. 24. Linardou H, Dahabreh IJ, Bafaloukos D, Molecular testing guideline for selection of lung Kosmidis P, Murray S. Somatic EGFR mutations cancer patients for EGFR and ALK tyrosine kinase and efficacy of tyrosine kinase inhibitors in inhibitors: guideline from the College of NSCLC. Nat Rev Clin Oncol 2009; 6(6): 352-66. American Pathologists, International Association 25. Zhou C, Wu YL, Chen G, et al. Erlotinib for the Study of Lung Cancer, and Association for versus chemotherapy as first-line treatment for Molecular Pathology. J Thorac Oncol 2013; 8(7): patients with advanced EGFR mutation-positive 823-59. non-small-cell lung cancer (OPTIMAL, CTONG- 34. Shaw AT, Yeap BY, Mino-Kenudson M, et 0802): a multicentre, open-label, randomised, al. Clinical features and outcome of patients with phase 3 study. Lancet Oncol 2011; 12(8): 735-42. non-small-cell lung cancer who harbor EML4- ALK. J Clin Oncol 2009; 27(26): 4247-53. 26. Royal College of Pathologists of Australasia. Lung cancer structured reporting 35. Kwak EL, Bang YJ, Camidge DR, et al. protocol. 2nd edition 2013. Anaplastic lymphoma kinase inhibition in non- https://www.clinicalguidelines.gov.au/node/335 small-cell lung cancer. N Engl J Med 2010; 0 accessed 11 April 2018. 363(18): 1693-703. 27. Terry J, Leung S, Laskin J, Leslie KO, Gown 36. Kris MG, Johnson BE, Berry LD, et al. Using AM, Ionescu DN. Optimal immunohistochemical multiplexed assays of oncogenic drivers in lung markers for distinguishing lung adenocarcinomas cancers to select targeted drugs. JAMA 2014; from squamous cell carcinomas in small tumor 311(19): 1998-2006. samples. Am J Surg Pathol 2010; 34(12): 1805-11. 37. Porta M, Crous-Bou M, Wark PA, et al. 28. Mukhopadhyay S, Katzenstein AL. Cigarette smoking and K-ras mutations in Subclassification of non-small cell lung pancreas, lung and colorectal adenocarcinomas: carcinomas lacking morphologic differentiation etiopathogenic similarities, differences and on biopsy specimens: Utility of an paradoxes. Mutat Res 2009; 682(2-3): 83-93. immunohistochemical panel containing TTF-1, 38. Sartori G, Cavazza A, Sgambato A, et al. napsin A, p63, and CK5/6. Am J Surg Pathol 2011; EGFR and K-ras mutations along the spectrum of 35(1): 15-25. pulmonary epithelial tumors of the lung and 29. Chu P, Wu E, Weiss LM. Cytokeratin 7 and elaboration of a combined clinicopathologic and cytokeratin 20 expression in epithelial molecular scoring system to predict clinical neoplasms: a survey of 435 cases. Mod Pathol responsiveness to EGFR inhibitors. Am J Clin 2000; 13(9): 962-72. Pathol 2009; 131(4): 478-89. 30. Besse B, Adjei A, Baas P, et al. 2nd ESMO 39. Eberhard DA, Johnson BE, Amler LC, et al. Consensus Conference on Lung Cancer: non- Mutations in the epidermal growth factor small-cell lung cancer first-line/second and receptor and in KRAS are predictive and further lines of treatment in advanced disease. prognostic indicators in patients with non-small- Ann Oncol 2014; 25(8): 1475-84. cell lung cancer treated with chemotherapy 31. Paez JG, Janne PA, Lee JC, et al. EGFR alone and in combination with erlotinib. J Clin mutations in lung cancer: correlation with clinical Oncol 2005; 23(25): 5900-9. response to gefitinib therapy. Science 2004; 40. Shepherd FA, Domerg C, Hainaut P, et al. 304(5676): 1497-500. Pooled analysis of the prognostic and predictive effects of KRAS mutation status and KRAS mutation subtype in early-stage resected non- 317 Lung Cancer 2019 Australian PEEK Study Section 11 small-cell lung cancer in four trials of adjuvant quality of life. J Psychosoc Oncol 2014; 32(1): 59- chemotherapy. J Clin Oncol 2013; 31(17): 2173- 73. 81. 50. Polanski J, Jankowska-Polanska B, 41. Ceppi P, Volante M, Novello S, et al. Rosinczuk J, Chabowski M, Szymanska- ERCC1 and RRM1 gene expressions but not EGFR Chabowska A. Quality of life of patients with lung are predictive of shorter survival in advanced cancer. Onco Targets Ther 2016; 9: 1023-8. non-small-cell lung cancer treated with cisplatin 51. Hermann CP, Looney SW. Determinants and gemcitabine. Ann Oncol 2006; 17(12): 1818- of quality of life in patients near the end of life: a 25. longitudinal perspective. Oncol Nurs Forum 2011; 42. Lee KH, Min HS, Han SW, et al. ERCC1 38(1): 23-31. expression by immunohistochemistry and EGFR 52. Gralla RJ. Quality-of-life considerations in mutations in resected non-small cell lung cancer. patients with advanced lung cancer: effect of Lung Cancer 2008; 60(3): 401-7. topotecan on symptom palliation and quality of 43. Shintani Y, Ohta M, Hirabayashi H, et al. life. Oncologist 2004; 9 Suppl 6: 14-24. Thymidylate synthase and dihydropyrimidine 53. Henoch I, Bergman B, Gustafsson M, dehydrogenase mRNA levels in tumor tissues and Gaston-Johansson F, Danielson E. The impact of the efficacy of 5-fluorouracil in patients with non- symptoms, coping capacity, and social support on small-cell lung cancer. Lung Cancer 2004; 45(2): quality of life experience over time in patients 189-96. with lung cancer. J Pain Symptom Manage 2007; 44. Deng GE, Rausch SM, Jones LW, et al. 34(4): 370-9. Complementary therapies and integrative 54. Brown DJ, McMillan DC, Milroy R. The medicine in lung cancer: Diagnosis and correlation between fatigue, physical function, management of lung cancer, 3rd ed: American the systemic inflammatory response, and College of Chest Physicians evidence-based psychological distress in patients with advanced clinical practice guidelines. Chest 2013; 143(5 lung cancer. Cancer 2005; 103(2): 377-82. Suppl): e420S-e36S. 55. Cooley ME. Quality of life in persons with 45. Bauml J, Langer CJ, Evans T, Garland SN, non-small cell lung cancer: a concept analysis. Desai K, Mao JJ. Does perceived control predict Cancer Nurs 1998; 21(3): 151-61. Complementary and Alternative Medicine (CAM) 56. Hewitt M, Rowland JH, Yancik R. Cancer use among patients with lung cancer? A cross- survivors in the United States: age, health, and sectional survey. Support Care Cancer 2014; disability. J Gerontol A Biol Sci Med Sci 2003; 22(9): 2465-72. 58(1): 82-91. 46. Micke O, Buntzel J, Kisters K, Schafer U, 57. Schag CA, Ganz PA, Wing DS, Sim MS, Lee Micke P, Mucke R. Complementary and JJ. Quality of life in adult survivors of lung, colon alternative medicine in lung cancer patients: a and prostate cancer. Qual Life Res 1994; 3(2): neglected phenomenon? Front Radiat Ther Oncol 127-41. 2010; 42: 198-205. 58. Chapple A, Ziebland S, McPherson A. 47. Klafke N, Eliott JA, Wittert GA, Olver IN. Stigma, shame, and blame experienced by Prevalence and predictors of complementary and patients with lung cancer: qualitative study. BMJ alternative medicine (CAM) use by men in 2004; 328(7454): 1470. Australian cancer outpatient services. Ann Oncol 2012; 23(6): 1571-8. 59. Cataldo JK, Jahan TM, Pongquan VL. Lung cancer stigma, depression, and quality of life 48. Barnes PM, Bloom B, Nahin RL. among ever and never smokers. Eur J Oncol Nurs Complementary and alternative medicine use 2012; 16(3): 264-9. among adults and children: United States, 2007. Natl Health Stat Report 2008; (12): 1-23. 60. Van Houtven CH, Ramsey SD, Hornbrook MC, Atienza AA, van Ryn M. Economic burden for 49. Brown Johnson CG, Brodsky JL, Cataldo informal caregivers of lung and colorectal cancer JK. Lung cancer stigma, anxiety, depression, and patients. Oncologist 2010; 15(8): 883-93. 318 Lung Cancer 2019 Australian PEEK Study Section 11 61. van Ryn M, Sanders S, Kahn K, et al. 71. Meropol NJ, Egleston BL, Buzaglo JS, et al. Objective burden, resources, and other stressors Cancer patient preferences for quality and length among informal cancer caregivers: a hidden of life. Cancer 2008; 113(12): 3459-66. quality issue? Psychooncology 2011; 20(1): 44- 72. Jennens RR, de Boer R, Irving L, Ball DL, 52. Rosenthal MA. Differences of opinion: a survey of 62. Bakas T, Lewis RR, Parsons JE. Caregiving knowledge and bias among clinicians regarding tasks among family caregivers of patients with the role of chemotherapy in metastatic non-small lung cancer. Oncol Nurs Forum 2001; 28(5): 847- cell lung cancer. Chest 2004; 126(6): 1985-93. 54. 73. Perez EA. Perceptions of prognosis, 63. Davidson PM, Jiwa M, Goldsmith AJ, et al. treatment, and treatment impact on prognosis in Decisions for lung cancer chemotherapy: the non-small cell lung cancer. Chest 1998; 114(2): influence of physician and patient factors. 593-604. Support Care Cancer 2011; 19(8): 1261-6. 74. Blinman P, Alam M, Duric V, McLachlan 64. Wan-Chow-Wah D, Monette J, Monette SA, Stockler MR. Patients' preferences for M, et al. Difficulties in decision making regarding chemotherapy in non-small-cell lung cancer: a chemotherapy for older cancer patients: A systematic review. Lung Cancer 2010; 69(2): 141- census of cancer physicians. Crit Rev Oncol 7. Hematol 2011; 78(1): 45-58. 75. Brundage MD, Feldman-Stewart D, Dixon 65. Dorman S, Hayes J, Pease N. What do P, et al. A treatment trade-off based decision aid patients with brain metastases from non-small for patients with locally advanced non-small cell cell lung cancer want from their treatment? lung cancer. Health Expect 2000; 3(1): 55-68. Palliat Med 2009; 23(7): 594-600. 76. Hotta K, Kiura K, Takigawa N, et al. Desire 66. Thornton M, Parry M, Gill P, Mead D, for information and involvement in treatment Macbeth F. Hard choices: a qualitative study of decisions: lung cancer patients' preferences and influences on the treatment decisions made by their physicians' perceptions: results from advanced lung cancer patients. Int J Palliat Nurs Okayama Lung Cancer Study Group Trial 0705. J 2011; 17(2): 68-74. Thorac Oncol 2010; 5(10): 1668-72. 67. Gerber DE, Hamann HA, Rasco DW, 77. Pardon K, Deschepper R, Stichele RV, et Woodruff S, Lee SJ. Patient comprehension and al. Preferences of advanced lung cancer patients attitudes toward maintenance chemotherapy for for patient-centred information and decision- lung cancer. Patient Educ Couns 2012; 89(1): 102- making: a prospective multicentre study in 13 8. hospitals in Belgium. Patient Educ Couns 2009; 68. Chu DT, Kim SW, Kuo HP, et al. Patient 77(3): 421-9. attitudes towards chemotherapy as assessed by 78. Pardon K, Deschepper R, Vander Stichele patient versus physician: a prospective R, et al. Changing preferences for information observational study in advanced non-small cell and participation in the last phase of life: a lung cancer. Lung Cancer 2007; 56(3): 433-43. longitudinal study among newly diagnosed 69. Tang JI, Shakespeare TP, Lu JJ, et al. advanced lung cancer patients. Support Care Patients' preference for radiotherapy Cancer 2012; 20(10): 2473-82. fractionation schedule in the palliation of 79. Schroen AT, Detterbeck FC, Crawford R, symptomatic unresectable lung cancer. J Med Rivera MP, Socinski MA. Beliefs among Imaging Radiat Oncol 2008; 52(5): 497-502. pulmonologists and thoracic surgeons in the 70. Bridges JF, Mohamed AF, Finnern HW, therapeutic approach to non-small cell lung Woehl A, Hauber AB. Patients' preferences for cancer. Chest 2000; 118(1): 129-37. treatment outcomes for advanced non-small cell 80. Jansen SJ, Otten W, Stiggelbout AM. lung cancer: a conjoint analysis. Lung Cancer Review of determinants of patients' preferences 2012; 77(1): 224-31. for adjuvant therapy in cancer. J Clin Oncol 2004; 22(15): 3181-90.

319 Lung Cancer 2019 Australian PEEK Study Section 11 81. Bayly JL, Lloyd-Williams M. Identifying 92. Brown NM, Lui CW, Robinson PC, Boyle functional impairment and rehabilitation needs FM. Supportive care needs and preferences of in patients newly diagnosed with inoperable lung lung cancer patients: a semi-structured cancer: a structured literature review. Support qualitative interview study. Support Care Cancer Care Cancer 2016; 24(5): 2359-79. 2015; 23(6): 1533-9. 82. Krishnasamy M, Wells M, Wilkie E. 93. Wilcock A, Crosby V, Hussain A, et al. Lung Patients and carer experiences of care provision cancer diagnosed following an emergency after a diagnosis of lung cancer in Scotland. admission: Mixed methods study of the Support Care Cancer 2007; 15(3): 327-32. management, outcomes and needs and 83. Hill KM, Amir Z, Muers MF, Connolly CK, experiences of patients and carers. Respir Med Round CE. Do newly diagnosed lung cancer 2016; 114: 38-45. patients feel their concerns are being met? Eur J 94. Lin JJ, Lake J, Wall MM, et al. Association Cancer Care (Engl) 2003; 12(1): 35-45. of patient-provider communication domains with 84. Milbury K, Badr H, Fossella F, Pisters KM, lung cancer treatment. J Thorac Oncol 2014; 9(9): Carmack CL. Longitudinal associations between 1249-54. caregiver burden and patient and spouse distress 95. Serena A, Dwyer A, Peters S, Eicher M. in couples coping with lung cancer. Support Care Feasibility of advanced practice nursing in lung Cancer 2013; 21(9): 2371-9. cancer consultations during early treatment: A 85. Temel JS, Greer JA, Goldberg S, et al. A phase II study. Eur J Oncol Nurs 2017; 29: 106-14. structured exercise program for patients with 96. Yates P, Schofield P, Zhao I, Currow D. advanced non-small cell lung cancer. J Thorac Supportive and palliative care for lung cancer Oncol 2009; 4(5): 595-601. patients. J Thorac Dis 2013; 5 Suppl 5: S623-8. 86. Bentley R, Hussain A, Maddocks M, 97. McCorkle R, Benoliel JQ, Donaldson G, Wilcock A. Occupational therapy needs of Georgiadou F, Moinpour C, Goodell B. A patients with thoracic cancer at the time of randomized clinical trial of home nursing care for diagnosis: findings of a dedicated rehabilitation lung cancer patients. Cancer 1989; 64(6): 1375- service. Support Care Cancer 2013; 21(6): 1519- 82. 24. 98. Moore S, Corner J, Haviland J, et al. Nurse 87. Jones LW. Physical activity and lung led follow up and conventional medical follow up cancer survivorship. Recent Results Cancer Res in management of patients with lung cancer: 2011; 186: 255-74. randomised trial. BMJ 2002; 325(7373): 1145. 88. Giuliani ME, Milne RA, Puts M, et al. The 99. Porter LS, Keefe FJ, Garst J, et al. prevalence and nature of supportive care needs Caregiver-assisted coping skills training for lung in lung cancer patients. Curr Oncol 2016; 23(4): cancer: results of a randomized clinical trial. J 258-65. Pain Symptom Manage 2011; 41(1): 1-13. 89. Hoffman AJ, Brintnall RA, von Eye A, 100. Abernethy AP, Currow DC, Frith P, Cooper J, Brown JK. The voice of postsurgical lung Fazekas BS, McHugh A, Bui C. Randomised, cancer patients regarding supportive care needs. double blind, placebo controlled crossover trial Lung Cancer (Auckl) 2014; 5: 21-31. of sustained release morphine for the 90. King J, Chamberland P, Rawji A, et al. management of refractory dyspnoea. BMJ 2003; Patient educational needs of patients undergoing 327(7414): 523-8. surgery for lung cancer. J Cancer Educ 2014; 101. Jennings AL, Davies AN, Higgins JP, Gibbs 29(4): 802-7. JS, Broadley KE. A systematic review of the use of 91. Liang R, Meiser B, Smith S, et al. Advanced opioids in the management of dyspnoea. Thorax cancer patients' attitudes towards, and 2002; 57(11): 939-44. experiences with, screening for somatic 102. Nava S, Ferrer M, Esquinas A, et al. mutations in tumours: a qualitative study. Eur J Palliative use of non-invasive ventilation in end- Cancer Care (Engl) 2017; 26(6).

320 Lung Cancer 2019 Australian PEEK Study Section 11 of-life patients with solid tumours: a randomised feasibility trial. Lancet Oncol 2013; 14(3): 219-27. 103. Bausewein C, Booth S, Gysels M, Higginson I. Non-pharmacological interventions for breathlessness in advanced stages of malignant and non-malignant diseases. Cochrane Database Syst Rev 2008; (2): CD005623. 104. Zhao I, Yates P. Non-pharmacological interventions for breathlessness management in patients with lung cancer: a systematic review. Palliat Med 2008; 22(6): 693-701. 105. Rueda JR, Sola I, Pascual A, Subirana Casacuberta M. Non-invasive interventions for improving well-being and quality of life in patients with lung cancer. Cochrane Database Syst Rev 2011; (9): CD004282. 106. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010; 363(8): 733-42. 107. Swerissen, H and Duckett, S., 2014, Dying Well. Grattan Institute ISBN: 978-1-925015-61-4. 108. Foreman LM, Hunt RW, Luke CG, Roder DM. Factors predictive of preferred place of death in the general population of South Australia. Palliat Med 2006; 20(4): 447-53. 109. Currow DC, Burns CM, Abernethy AP. Place of death for people with noncancer and cancer illness in South Australia: a population- based survey. J Palliat Care 2008; 24(3): 144-50. 110. Rosenwax LK, McNamara BA, Murray K, McCabe RJ, Aoun SM, Currow DC. Hospital and emergency department use in the last year of life: a baseline for future modifications to end-of-life care. Med J Aust 2011; 194(11): 570-3. 111. Jakobsson E, Bergh I, Ohlen J. The turning point: identifying end-of-life care in everyday health care practice. Contemp Nurse 2007; 27(1): 107-18. 112. Bostanci A, Horey D, Jackson K, et al. Insights into hospitalisation of advanced cancer patients: a study of medical records. Eur J Cancer Care (Engl) 2016; 25(1): 190-201. 113. Gott M, Ingleton C, Bennett MI, Gardiner C. Transitions to palliative care in acute hospitals in England: qualitative study. BMJ Support Palliat Care 2011; 1(1): 42-8.

321 Lung Cancer 2019 Australian PEEK Study Section 12 Section 12 Next steps

Lung Cancer 2018 Australian PEEK Study Section 12 Next steps

At the end of each PEEK study, CCDR identifies three key areas based on patient experience and feedback that, if improved, would increase the quality of life and/or the ability for individuals to better manage their own health.

In relation to the lung cancer community, these three areas are:

• Where public health campaigns are developed to prevent lung cancer, that these are developed in a way that protects people currently diagnosed, from the impact of negative stigma and include information about risks and symptoms that are not related to smoking. • Information and support services that are more targeted in relation to stage of disease and sub-types of disease, including support for carers, to reduce the negative impact on quality of life caused by lung cancer. • Research funding for lung cancer that reflects the mortality and prevalence of the disease, and an increase in the number of clinical trials available to aid timely decisions about new treatments.

2018 Lung Cancer metrics Data collected in this PEEK study also provides a basis on which future interventions and public health initiatives can be based. Some of the 2018 lung cancer metrics that the sector can work together to improve upon are provided in Table 12.1

Table 12.1: Lung cancer 2018 Metrics Area of evaluation 2018 data Baseline health Mean Median Physical functioning 60.63 65.00 Role functioning/physical 46.88 50.00 Role functioning/emotional 55.83 66.67 Energy/fatigue* 43.31 45.00 Emotional well-being 65.05 62.00 Social functioning 61.09 62.50 Pain 66.34 67.50 General health 46.13 45.00 Health change 48.75 50.00 Percentage of participants that have accessed My Health Record 15.00% Percentage of participants that have a discussion about biomarkers/genetic 48.75% tests Knowledge of condition and treatments (Partners in Health) Mean Median Knowledge 27.28 28.00 Coping* 16.23 16.50 Recognition and management of symptoms 20.63 21.50 Adherence to treatment 14.70 15.50 Total score 78.83 81.50 Care Coordination and care received Mean Median Communication* 39.50 41.00 Navigation* 26.20 26.00 Total Score* 65.70 66.50 Care coordination global measure 7.18 8.0 Quality of care global measure 7.98 8.0 Fear of progression Mean Median Total Score* 37.00 37.00 *Normal distribution, use mean as measure of central tendency

323 Lung Cancer 2018 Australian PEEK Study