2018 TIONS TA TIENT KNOWLEDGE PA EXPEC 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.