2017 KNOWLEDGE PA TIENT EXPEC TA TIONS EXPERIENCE

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Chronic Heart Failure Australian Study PEEK Volume 1 Issue 3 December 2017 This study was generously sponsored by AstraZeneca Australia.

AstraZeneca Australia provided arm’s length sponsorship for the International Centre for Community- Driven Research to implement the PEEK protocol in Chronic Kidney Disease. The sponsor had no input into the methodology, data collection, data analysis of reporting.

Study partners included the International Centre for Community-Driven Research and Kidney Health Australia.

The International Centre for Community-Driven Research research team for this study included: Catherine Holliday Anne Holliday Josephine Byrne Kirilee Matters Hunter Baggen Sarah Due Katriona Smith Charlotte Logeman Anne Sullivan Darron Webber Caroline Wilksch

We especially thank each and every person that participated in this study

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Contents

Summary of Results 4

Section 1: Introduction and methodology 17

Section 2: Demographics 26

Section 3: Symptoms and diagnosis 59

Section 4: Decision-making 69

Section 5: Treatment 80

Section 6: Communication and information 95

Section 7: Care and support 128

Section 8: Quality of life and experience in the health system 147

Section 9: Expectations and Messages 160

Section 10: Advice 178

Section 11: Discussion 182

Section 12: What’s next? 189 Summary Summary of Results

4 Chronic Heart Failure 2017 Australian PEEK Study Summary

Section 1: Introduction • Cardiovascular disease is defined by the general conditions narrowing or blocking blood vessels that can lead to a heart attack, chest pain or stroke and may also affect the heart muscle, valves or rhythm. Heart failure is a condition when the heart is unable to maintain a strong enough blood flow to meet the body’s requirements and can develop suddenly but often develops over years with the initial stages involving other cardiovascular disease conditions. The most common symptoms are dyspnoea, cough, fatigue and weakness, fluid retention dizzy spells or palpitations • 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, 50 people with chronic heart failure (CHF) throughout Australia participated in the study that included a structured interview and quantitative questionnaire. This study in CHF is therefore the largest mixed methodology study in Australia. 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.

Section 2: Demographics and study population characteristics • Fifty participants from Australia were included in the study. • Participants included all NYHA classes with 6 Class I (12.0%), 9 Class II (18.0%), 32 Class III (64.0%), and 3 Class IV (6.0%). • Participants came from NSW (34.0%), Queensland (28.0%), Victoria (22.0%), Western Australia (10.0%) and South Australia (6.0%), from major cities (29.0%), inner regional (16.0%), and outer regional (5.0%). • Thirty-four females (64.0%) and 14 males (28.0%) were included in this study. • In addition to CHF, 34 had sleep problems (64.0%), 24 had arthritis (48%), 24 had arrhythmia (48%), 24 had hypertension (48%), and 5 participants had a hyperkalemia diagnosis (10.0%). These were included for sub- group analysis throughout the study. • The SF36 scores for the entire cohort were good for role limitations due to emotional problems, emotional well-being, and social functioning; the scores for physical functioning, energy/fatigue, pain and health change were moderate. The general health scale was poor and role limitations due to physical function was very poor. • Participants with NHYA classes I and II had higher scores for the SF36 physical functioning, role limitations due to physical health, role limitations due to emotional health, energy/fatigue, emotional well-being and general health subscales, compared with NHYA class III and IV. • Participants without sleep problems had higher scores for the physical functioning, role limitations due to physical health, role limitations due to emotional problems, energy/fatigue, social functioning, general health, and health change subscales, compared with those with sleep problems. • No differences in SF36 subscales were observed for those that lived in major cities compared to those that live in regional areas, arthritis status, arrhythmia status or hyperkalaemia status.

5 Summary Section 3: Experience of symptoms and diagnosis Symptoms at diagnosis • Participants were asked which symptoms they noticed before diagnosis. The most common symptom experienced by all participants was feeling tired (fatigue) (n=44; 88.00%) followed by being breathless (n=41; 82.00%), weakness (n=37; 74.00%) and weight gain (n=30; 60.00%). Other symptoms noted by more than half of all participants were swollen ankles (n=28; 56.00%) and dizziness (n=28; 56.00%). • There was one variation between subgroups in relation to symptoms experienced. Participants with class I/II heart failure noted loss of appetite less frequently than participants with class III/IV disease (20.00% compared to 37.14% in participants with class III/IV disease). • All symptoms experienced by participant had a mean score of between 2.07 and 2.97, that is, they were all scored in the ‘life was distressing to ‘life was a little distressing’ range. • The majority of participants described having a significant cardiac event that led them to their diagnosis. This was noted by 29 participants (58.00%). • In relation to specific symptoms leading to diagnosis, shortness of breath was the most commonly noted symptom (n=19; 38.00%) followed by chest pain or palpitations (n=18; 36.00%). There were 14 participants (28.00%) that described just not feeling right and/or having flu-like symptoms. • There was one variation between subgroups in relation to symptoms leading to diagnosis. Participants with hypertension noted feeling ‘not quite right’ more frequently than participants the general cohort (41.67% compared to 28.00% in the general cohort). • Within participant’s description of symptoms and diagnosis, it was possible to code data to determine their diagnostic pathway. The most common pathway described was through a hospital emergency admission (n=24; 48.00%) followed by a General Practitioner referral to a cardiologist (n=12; 24.00%). There were also 12 participants (24.00%) that described that their initial investigation did not lead to a diagnosis, with symptoms persisting and the diagnosis coming later. • Participants were asked in the questionnaire to provide the date (as close as possible) of when they started to notice symptoms and the date (as close as possible) of when they were diagnosed. Days to diagnosis for participants with class I/II disease was 81.89 days compared with 136.72 for class III/IV participants. Days to diagnosis for metropolitan participants was 83.73 days compared to 161.83 days for regional/rural participants. Six outliers were removed from this calculation (days from symptoms to diagnosis was greater than 1000 days). • There were various combinations of diagnostic tests conducted with the most common tests recalled being electrocardiogram (n=38; 78.00%) and echocardiogram (n=35; 70%). Other tests included coronary angiogram (n=30; 60.00%) and chest x-ray (n=24; 48%). • In the questionnaire, participants were asked whether they felt supported at the time of diagnosis. There were 27 participants (54.00%) that noted they had no support and this was the most common response followed by having enough support (n=16; 32.00%). The least frequent response was having some support, but not enough (n=7; 14.00%). Genetic/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. The majority of participants (n=43; 86.00%) had not had a discussion while seven (14.00%%) stated they had had a discussion about this kind of test, of which four participants actually had the test. Knowledge of condition and prognosis • Participants were asked how much they knew about their condition at diagnosis. The majority of participants (n=45; 90.00%) knew nothing or very little about their condition. There was one participant (2.00%) that stated they knew about the condition, however most of their knowledge came from subsequent research that they did post-diagnosis. • There were 10 participants (20.00%) that had a lack of clarity in relation to prognosis however the majority of participants (n=30; 60.00%) were able to provide a description of prognosis with many also describing treatment options for the future

6 Summary

Section 4: Decision-making Conversations about treatments • Participants were asked to describe the conversation that they had with the clinician about treatment at diagnosis. The most common theme was related to participants describing discussions being focused on disease progression and treatment options (n=19; 38.00%). There were nine participants (18.00%) that described being told what to do without discussion as such, and this was the second most common theme. Clinical trials • Participants were asked whether they had had a discussion about clinical trials. The majority of participants (n=37; 74.00%) noted that they had not discussed clinical trials. There were 10 participants that (20.00%) noted their doctor had discussed clinical trials with them, and nine of these participants (18.00%) went on to participating in a clinical trial. These participants were asked whether they felt supported and their experience throughout the trial. • Participants from regional/rural areas reported not being spoken to about clinical trials more frequently than participants in metropolitan areas (85.71% compared to 74.00% in metropolitan areas). They also reported that their doctor brought up the topic of clinical trials less frequently than participants in metropolitan areas (9.52% compared to 27.59% in metropolitan areas). • As a follow-up question, participants were asked whether they would be interested in clinical trials in the future. Most participants (n=35; 70.00%) stated that they would be interested in a clinical trial, with six participants (12.00%) that were not interested. • Participants in regional/rural areas reported that they had not participate in a clinical trial and did not want to more frequently than participants in metropolitan areas (23.81% compared to 3.45% for metropolitan participants). They also reported participating in clinical trials less frequently than participants in metropolitan areas (4.76% compared to 27.59% for metropolitan participants). Decision-making • Participants were asked who was involved in decisions made about treatment and care. The most common theme (n=29; 58.00%) was that decision-making was primarily between themselves, family (in some cases close friends) and their treating clinician. The remaining themes were variations of this combination with 14 participants (28.00%) describing decision-making between themselves and their treating clinician and 5 participants (10.00%) describing decision-making between themselves and their family. Participants also spoke about not including some family members as they didn’t feel it was necessary at this time or they did not want to worry them • Participants were asked about the things that they take into consideration when making decisions about treatment. The most common theme identified was taking into account the impact on everyday living and ability to live as normal a life as possible (n=17; 34.00%). This related to overall quality of life. • Participants in regional/rural areas reported taking into account success rate balanced with outcome less frequently than participants in metropolitan areas (4.76% compared to 27.59% for metropolitan participants). They also taking into account the impact on their family more frequently than participants in metropolitan areas (23.81% compared to 13.79% for metropolitan participants). Participants with class I or class II disease reported taking into account the impact on everyday living less frequently than participants with class III or class IV disease (26.67% compared to 37.14% for class III or class IV disease). Participants with class I or class II disease described taking into account success rate balanced with outcome more frequently than participants with class III or class IV disease (26.67% compared to 14.29% for class III or class IV disease) and there were no participants with class I or class II disease that described primarily taking into account the advice of their clinician (25.71% for class3/class 4 participants). Participants with arrhythmias described primarily taking into account the advice of their clinician less frequently than the general cohort (8.33% compared to the general cohort). • Participants were asked whether they felt the way they made decisions had changed over time since they were diagnosed. The most common theme was that participants primarily made decisions in the same way. For those who had changed the way they make decisions, there were 15 participants (30.00%) that noted that this was in relation to being more assertive and informed.

7 Summary • Participants from regional/rural areas reported making decisions in the same way more frequently than participants from metropolitan areas (47.62% compared to 34.48% for participants in metropolitan areas). They also described being assertive and more informed less frequently than metropolitan participants (9.52% compared to 44.83% for participants in metropolitan areas). Participants with hypertension reported making decisions in the same way more frequently than the general cohort (50.00% compared to 40.00% in the general cohort).

Section 5: Experience of treatment Treatments experienced • The most commonly treatments reported were beta blockers (n=37; 74.00%), followed by diuretics (n=35; 70.00%), Asprin (n=34; 68.00%) and statins (n=33; 66.00%). There were 24 participants (48.00%) that reported being on Angiotensin II receptor blockers and 24 participants (48.00%) that reported being on ACE inhibitors. There were also 17 participants (34.00%) that reporting have a pacemaker or implantable cardiac defibrillator. Quality of life while using treatments • In relation to treatments, mean quality of life scores ranges from 3.58 to 4.32, that is, all quality of life scores were with the ‘life was distressing’ to ‘Life was average’ range. The treatments that scored the least impact on quality of life were asprin (average score 4.32), angiotensin II receptor blockers (average score 4.25) and calcium channel blockers (average score 4.00). The treatments that scored the most impact on quality of life were ACE inhibitors (average score 3.58), glycosides (average score 3.69) and statins (average score 3.76). Effectiveness of treatments • The treatments that had a mean effectiveness score of at least 4 (Effective) were diuretics (average score 4.06) and pacemaker/implantable cardiac defibrillator (average score 4.35). There were five treatments that scored in the ‘Moderately effective’ range, those were asprin (average score 3.94), calcium channel blockers (average score 3.78), beta blockers (average score 3.62), and angiotensin II receptor blockers (average score 3.38). The treatments that were scored as being ‘Somewhat effective’ were statins (average score 2.97) and glycosides (average score 2.85). Side effects of treatments • In relation to coping with side effects, there 16 participants that described having side effects, however learning to live them (n=16; 32.00%). Within this this theme, there was an acceptance that side effects were part of life and part of the treatment doing its job. • There was a broad range of difficult side effects mentioned by participants including fogginess, nausea, bowel control, stiff legs, fatigue, hair loss, sun sensitivity and headaches, however there were only two themes that were noted more than five times across the study population. The most common theme in relation to side effects that were difficult to cope with was dizziness (n=7; 14.00%) and the second most common theme was that there was nothing that they were not able to cope with (n=5; 10.00%). In relation to dizziness, participants spoke about the impact on their everyday living and ability to function normally Changes in medication • Participants were asked whether they had ever needed to change medications. The main changes in medication noted were in relation to side effects or the participant not being able to tolerate a specific treatment (n=11; 22.00%). This was followed by a change in the dose of medication (n=10; 20.00%). In relation to the change in medication due to side effects, participants spoke about also changing brand of treatment as a solution. In relation to sub-group variations, participants in regional/rural areas described a change in medication (change in dose) less frequently than participants in metropolitan areas (9.52% compared to 27.59% in metropolitan areas). • The majority of participants described that their doctor has explained the reason for any change in medication, there were however seven participants (14.00%) that noted there was not explanation given. These participants also described coming up with their own rationale for the change in the absence of an explanation by their doctor.

8 Summary Adherence to medication • Participants were asked how long they stick with a therapy before they think it might not be working or give up on it. 20 participants (40.00%) stated that they stick with medications as long as it is prescribed, often noting needing to get the doctor’s permission before they would change anything. There were ten participants (20.00%) that stated they adhere to medications for around one month, with participants commenting about this being the time frame in which they could tolerate side effects. • There was one sub-group variation. Participants with hypertension described adhering to medications as long as prescribed less frequently than the general cohort (29.17% compared to 40.00% in the general cohort). • Participants were asked what needed to change for them to feel as though a treatment was working. There were three main themes including improvements in general well-being so that they can function and achieve everyday tasks (n=12; 24.00%), maintaining heart rhythm/not having palpitations (n=11; 22.00%) and having more energy/less fatigue (n=11; 22.00%). Complementary therapies • Participants were asked whether they had used any complementary therapies. Half of all participants stated that they used complementary therapies in the form of vitamins and supplements, often coenzyme Q10 (n=25; 50.00%). There were 16 participants (32.00%) that stated that they did not use complementary therapies, noting that they were sceptical of them or worried about how they would interact with their prescribed medication. Service provision and affordability • The majority of participants were treated for CHF in the public healthcare system (n=35, 70.00%), most were treated as a public patient (n=27, 54.00%), and had health insurance (n=29, 58.00%). • The majority of patients never had to cancel healthcare appointments (n=37, 74.00%), and they were never unable to afford essential prescriptions (n=38, 76.00%). However, half of the participants (n=25, 28.00%) at some point found it difficult to pay for basic necessities such as housing, food and electricity. Other costs to participants include the need for a carer (n=15, 30.00%) and changes in employment status resulting in lost income (n=31, 62.00%).

Section 6: Information and communication Access to information • The majority of participants (n=23; 46.00%) had accessed information online, followed by information that they had sourced though peers (n=15; 30.00%). • There were 15 participants (30.00%) that described accessing information through nurses or cardiac rehabilitation, however participants with Class I/Class II disease accessed information this way less frequently (13.33% compared to 30.00% in the general cohort). There was also a variation in relation to sub- groups and access to information. Rural/Regional participants described accessing information through speaking with their doctor less frequently than participants living in a metropolitan area and less frequently than the general cohort (4.67% compared to 31.03% in metropolitan areas and 20.00% in the general population). Information given by healthcare professionals and searched for independently. • 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 disease management (64.00%), treatment options (56.00%) and dietary information (54.00%) were most frequently given to participants by healthcare professionals, and information about complementary therapies (6.00%), how to interpret test results (12.00%) and clinical trials (16.00%) were give least often (Figure 6.45). Information about disease cause (48.00%), disease management (46.00%), and diet (44.00%) were most often searched for independently by participants, and clinical trials (10.00%) and complementary therapies (20.00%) were the least searched for.

9 Summary Most trusted information sources • Participants were asked to rank which information source that they most trusted, where 1 is the most trusted and 4 is the least trusted. A weighted average is presented in Figure 6.52. With a weighted ranking, the higher the score, the more trusted the source of information to the participant. Across all participants, information from the participants’ hospital or clinic was the most trusted, followed by not for profit or charitable organisations Information that is helpful • In relation to information that had been helpful, there were three key themes including specific information on the mechanisms of disease (n=12; 24.00%), communicating with other patients (n=11; 22.00%), and being able to speak with nurse (n=8, 16.00%). Information that is not helpful • The main theme in this section was that all information is useful (n=16; 32.00%). Where participants noted that there was information that was not helpful, this fell into three main themes including the cardiologist generally not being helpful (n=12; 24.00%), information that was not specific to chronic heart failure (n=8; 16.00%) and information that was not age-appropriate (n=6; 12.00%). 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. Close to half of the participants (n=21; 42.00%) described a preference for talking to someone. The second most common theme was accessing information online (n=10; 20.00%). There were no participants that had a preference for phone Apps. • There was one variation between subgroups. Participants with Class 1/Class 2 described a preference for talking to someone less frequently than participants with class III or class IV disease and less frequently than the general cohort (20.00% compared to 51.43% of class III or class IV participants and 42.00% in the genera cohort). Timing of information • Participants were asked to reflect on their experience and think about when they were most receptive to receiving information, not when they actually received the information, but when they felt they could take it all in. There two key themes identified including at or close to diagnosis (n=18; 36.00%) and about a month or so after diagnosis, often following discharge from hospital (n=14; 28.00%). • There was one variation in relation to sub-groups. Participants with hypertension described being more receptive to information following discharge/after a month or so more frequently than the general cohort (45.83% compared to 28.00% in the general cohort). 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 had very good communication with their nurse (n=24; 50.00%). There were 15 participants (30.00%) that were satisfied with the communication they had with health professionals, while an additional 15 participants (30.00%) described having difficulties in relation to communication with their cardiologist. • There were two variations in relation to sub-groups. Participants in regional/rural areas spoke about being satisfied with communication less frequently than participants in metropolitan areas (19.05% compared to 37.93% in metropolitan areas) and also described having difficult communication with their specialist more frequently than participants in metropolitan areas (42.86% compared to 20.69% in metropolitan areas). Respect • The majority of participants responded that they felt they had been treated respectfully (n=31; 64.00%), while 17 participants (34.00%) described being treated respectfully most of the time. • Participants that noted that they had not always been treated respectfully (n=17; 34.00%) spoke about being treated respectfully for the most part, however they described single incidents or issues with particular health professionals

10 Summary Knowledge and understanding of condition • Overall, participants scored well in the Partners in Health questionnaire, with a very good score for knowledge, adherence to treatment, and management of symptoms, coping and the total score. • Participants with Class I and II disease scored lower Partners in Health – Coping compared with c class 3 or class 4lass III and IV, indicating that Class I and II disease were better able to cope. • Participants that live in major cities scored higher in the PIH – Adherence to Treatment subscale compared to those that live in regional areas, indicating that those that live in cities adhere to treatment better than those in regional areas. • Partners in health management of symptoms, coping and total score was higher for those with arthritis compared to those without. • Partners in health coping and total score was higher for those with hypertension compared to those without.

Section 7: Experience of care and support Coordination of care • Overall the entire cohort had a mean communication score of 40.04, and a total score of 66.38; these scores fall in the middle of the scale. The mean score for navigation was 26.34, and the median scores for Care co- ordination was 6.7, and the median score for care received was 7.6; these scores fall in the second highest quintiles indicating good care coordination and care received. • Participants from metropolitan areas experienced significantly better care compared to those that live in regional areas. • Participants with arrhythmia were better able to navigate care than those without arrhythmias.

Care and support • The majority of participants described care and support coming from family and friends (n=29; 58.00%), and this was the most common theme followed by care and support accessed from the hospital setting (n=26; 52.00%) and from other patients (n=10; 20.00%). • Participants with class I or class II disease described support from the hospital setting less frequently than participants with class III or class IV (40.00% compared to 57.14% for class III/class IV). Participants in regional/rural areas also described this less frequently than participants in metropolitan areas (42.86% compared to 58.62% in metropolitan areas.)

Section 8: Experience of quality of life Quality of life • There were four key themes identified in relation to impact on quality of life, with the most common theme being the impact on their family (n=16; 32.00%), followed by an impact on the individual in relation to their personal identity (n=16; 32.00%). Other themes included the impact of fatigue and needing to slow down (n=11; 22.00%) and difficulty travelling (n=9; 18.00%). • There were two variations in relation to sub-groups. Participants with Class I/Class II disease described not being able to travel less frequently than participants with Class III/Class IV participants as well as the general cohort (6.67% compared to 22.86% for Class III/Class IV participants and 18.00% for the general population). Participants with Class I/Class II disease described the impact on family dynamics less frequently than participants with Class III/Class IV participants as well as the general cohort (20.00% compared to 37.14% for Class III/Class IV participants and 32.00% for the general population). Within this same theme, participants in regional/rural areas were more likely to describe an impact (42.86% for regional/rural participants compared to 24.14% for metropolitan participants).

11 Summary Regular activities to maintain health • Participants were asked what were some of the things that they needed to do regularly to maintain their health. There were 22 participants (44.00%) that described needing take things slowly and have regular rest to maintain their health. There were also 22 participants (44.00%) that described the need for gentle exercise to maintain their health and these were the most common themes followed by the need to adhere to regular medication (n=19; 38.00%). Impact on relationships • Participants were asked whether having heart failure has had an impact on their relationships with family and friends. The main theme identified was that relationships had not been affected (n=11; 22.00%). In contrast, 11 participants (22.00%) described a negative impact in relation to being more withdrawn or feeling isolated because of their condition while 10 participants (20.00%) relationships becoming stronger and feeling supported. • There were two variations in relation to sub-groups. There were no participants with Class I/Class II disease that described being more withdrawn or feeling isolated and this sub-group described no effect on relationships more frequently that participants with Class III/Class IV disease (40.00% compared to 14.29% of Class III/Class IV participants and 22.00% in the general cohort). • As a follow-up question, participants were asked whether they felt their condition had resulted in any additional burden on their family. There were 24 participants (48.00%) that felt as though there was not an extra burden on their family. Within that group 13 participants noted that their condition was part of their everyday life and family members tended to get in and help when needed. There were 13 participants (22.00%) that described some burden, particularly if they had a short-term exacerbation or medical event. • There was one variation in relation to sub-groups. Participants with arrhythmias described feeling as though there was no additional burden on their family less frequently than the general cohort (12.50% compared to 22.00% in the general cohort). 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 32.69, which is a score in the middle of the scale. • Participants with Class III and IV disease had higher scores for the Fear of Progression Total Score, compared with those with Class I and II disease, indicating those with worse more progressed disease have a higher fear of progression or anxiety in relation to their disease. • Participants without hypertension and without arthritis had higher scores for the Fear of Progression Total Score, compared with those with hypertension and with arthritis respectively, indicating those without hypertension and without arthritis have a higher fear of progression.

Section 9: Expectations of future treatment, care and support, information and communication Expectations of future treatment • When asked about their expectations of future treatment, there were a number of themes that emerged, however no theme had a frequency of more than eight. Themes included the expectation of better diagnostic tests (n=6; 12.00%), the expectations of treatments that are less invasive (n=6; 12.00%), and the expectation that treatments will stabilise or slow disease progression (n=5; 10.00%). There were two additional themes that emerged from this question. There were eight participants (16.00%) that spoke about being satisfied and grateful for current treatments and the health system, and this was the most frequent theme. There were also five participants (10.00%) that spoke about finding hope in new treatments and the expectation of more research. • There was a variation between sub-groups in relation to being satisfied and grateful for current treatments and the health system. Participants with Class I/Class II disease spoke about this more frequently than participants with Stage III/Stage IV disease and the general cohort (33.33% compared to 8.57% of Stage III/Stage IV participants and 16.00% within the general cohort).

12 Summary

• Participants were asked how many months to years of good quality of life they would expect a treatment to provide to feel that it was a worthwhile treatment. Overall, the highest number of participants wanted a treatment to last for 10 years or more (N= 24, 48.00%). By groups, 10 years or more was the highest response for subgroups by location, sleep problem status, and hyperkalaemia status; and for NYHA Class II and IV, those with arthritis, with hypertension and those without arrhythmia. Equal amounts of participants without arthritis and those with arrhythmia wanted either between five and ten years or more than ten years, and most without hypertension and NYHA class II and IV participants wanted between five and 10 years. • 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 shortness of breath, tiredness and heart palpitations, the least important constipation, loss of appetite and cough. In relation to sub-group variations, the main difference was that pain was the most important symptom to control for disease class I and II, and for both city and regional locations. • Participants were asked to rank what is important for them overall when they make decisions about treatment and care. The most important aspects were safety of treatment/weighing up risks and benefits, severity of side effects and impact on quality of life. The least important were cost, ability to stick to treatment and including family in decision-making. • 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 and access for all patients to all treatments and services, the least important was economic value to government. Expectation of future information provision • Participants were asked what they would like to see in the future in relation to information provision. The most frequent theme was that participants were satisfied with the information that they had access to (n=15; 30.00%). Where participants had recommendations for the future, the most common themes were information about everyday life and what to expect (n=6; 12.00%), information that provides a technical or detailed explanation of how the heart works and the need for more information that is specifically about heart failure and the sub-types (n=5; 10.00%). Expectation of future healthcare professional communication • Participants were asked whether there was anything they would like to see improved in the future in relation to the way that health professionals communicate with patients. The most frequent theme was the expectation that health professionals communicate with more compassion, empathy and patience (n=21; 42.00%). There were 19 participants (38.00%) that described being happy with the communication they had with health professionals and this was the second most common theme. • There was one variation between sub-groups in relation to participants that were satisfied with communication. Participants with arthritis noted this less frequently than the general cohort (20.83% compared to 38.00% in the general cohort). Expectation of future care and support • There were three main themes identified including recommendations to develop initiatives that support patients between appointments (n=14; 28.00%) and recommendations to provide more connection with other patients (n=11; 22.00%). There were also 11 participants (22.00%) that were satisfied with care and support and did not have a specific recommendation. Messages • Participants were asked what their message to people who make decisions about their condition would be. The most common theme described by more than half of participants (n=27; 54.00%) was the message that decision-makers need to consider the person in front of them and understand the complexities of their situation, not only the economics. The second most common theme was the message that costs need to be more consistent to ensure equitable access to treatments and services (n=11; 22.00%). This was followed by calls for more funding into research and services (n=8; 16.00%). There were also six participants (12.00%) that specifically described being appreciative of the health system in Australia.

13 Summary

Section 10: Advice to other patients and families • Participants were asked what advice they would give to other people who are newly diagnosed with chronic heart failure and their families. There were three key themes of equal frequency identified to ask questions and be informed and assertive (n=15; 30.00%), seek help and have a good relationship with your healthcare team (n=15; 30.00%) and to find acceptance with your condition and know your limitations (n=15; 30.00%).

14 Summary

Table i: Sub-group variations Class I/Class II Class III/Class IV Arthritis Arrhythmias Hypertension Regional/ Rural Metropolitan Symptoms experienced Loss of appetite less Feeling ‘not quite right’ Clinical trials Not being spoken to about clinical trials

Clinical trial participation

No desire to participate in trials Decisions about Impact on everyday Advice of their clinician Success rate balanced treatment living with outcome

Success rate balanced Impact on family with outcome Considerations when Making decisions in the Making decisions in the making decisions about same way same way treatment Being assertive and more informed Changes in approach to decision making Side effect (difficulty coping with) Changes in medication Change in medication (change in dose) Adherence to Adhering to medication medications as long as prescribed Complementary therapies Access to information Speaking with their doctor

Baseline health Information Talking to someone preferences Timing of information Following discharge/

15 Chronic Heart Failure 2017 Australian PEEK Study Summary

Class I/Class II Class III/Class IV Arthritis Arrhythmias Hypertension Regional/ Rural Metropolitan after a month Partners in Health Lower coping score Higher management of Lower adherence to symptoms, coping and treatment score total score Health professional Satisfied with communication communication

Difficult communication with their specialist Care coordination Better able to navigate Received better care the health system Respect Care and support Support from the Support from the hospital setting hospital setting Quality of life Not being able to travel Impact on family dynamics Impact on family dynamics Impact on relationships No effect on No additional burden relationships on their family Burden on family Fear of Progression Higher fear of Lower fear of Lower fear of progression progression progression Symptoms/aspects of Pain was the most Pain was the most Pain was the most quality of life would important symptom important symptom important symptom they want controlled in (versus shortness of (versus shortness of (versus shortness of a treatment breath in general breath in general breath in general cohort) cohort)Pain was the cohort)Pain was the most important most important symptom symptom

Key Less frequently More frequently

16 Chronic Heart Failure 2017 Australian PEEK Study Section 1

Section 1 Introduction and methods

Chronic Heart Failure 2017 Australian PEEK Study Section 1

Section 1: Introduction and methodology Summary • Cardiovascular disease is defined by the general conditions narrowing or blocking blood vessels that can lead to a heart attack, chest pain or stroke and may also affect the heart muscle, valves or rhythm. Heart failure is a condition when the heart is unable to maintain a strong enough blood flow to meet the body’s requirements and can develop suddenly but often develops over years with the initial stages involving other cardiovascular disease conditions. The most common symptoms are dyspnoea, cough, fatigue and weakness, fluid retention dizzy spells or palpitations • 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, 50 people with chronic heart failure (CHF) throughout Australia participated in the study that included a structured interview and quantitative questionnaire. This study in CHF is therefore the largest mixed methodology study in Australia. 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.

18 Chronic Heart Failure 2017 Australian PEEK Study Section 1 Introduction with CHF based on self reported data from the ABS National Health Survey in 2014-15, the disease is Cardiovascular disease is defined by the general more prevalent in those aged 65 and older conditions narrowing or blocking blood vessels that (approximately 60%), and in males (approximately can lead to a heart attack, chest pain or stroke and 60%) [8]. In 2016, CHF was an underlying cause of may also affect the heart muscle, valves or rhythm [1, death for 2,958 deaths, accounting for just under 2% 2]. Heart failure is a condition when the heart is of deaths in Australia [9]. The incidence and cost of unable to maintain a strong enough blood flow to heart failure is likely to increase as heart failure is meet the body’s requirements and can develop predominantly a disease of the elderly and the ageing suddenly but often develops over years with the initial population [10]. It was estimated that 22% of those stages involving other cardiovascular disease hospitalized with a first heart attack went on to conditions [3]. The most common symptoms are develop heart failure within 28 days of admission [10]. dyspnoea, cough, fatigue and weakness, fluid retention dizzy spells or palpitations [4, 5]. • Chronic heart failure is classified based on the

NYHA grading system that focuses on Risk factors for heart failure are common to those for symptom progression [11]: heart disease. Age and ischemic heart disease are the • Class I or stage A is defined by a patient with most predominant risk factors [4]. Other major risk no physical limitations and does not factors are male sex, hypertension, LV hypertrophy, experience fatigue, dyspnoea or palpitations myocardial infarction, valvular heart disease, obesity, • Class II or stage B is classified with slight diabetes[5]. Minor clinical risk factors are smoking, limitations of physical activity with mild dyslipidaemia, chronic kidney disease, albuminuria, fatigue, palpitation, dyspnoea or angina sleep-disordered breathing, anaemia increased heart pectoris rate, dietary risk factors, sedentary lifestyle, low • Class III or stage C is presented with marked socioeconomic status and psychological stress [5]. limitations of physical activity and less than There are also risks associated to infections, immune- ordinary physical activity leading to symptoms mediated, genetic risks (such as family history) and • Class IV or stage D is classified as a patient toxic risks such as chemotherapy and cocaine[5]. The unable to carry on any physical activity incidence of chronic heart failure is seen with one without discomfort, including rest third cases in those aged 75 years and older indicating that age is a significant risk factor [6]. In 7 to 8 years Patient Experience, Expectations and Knowledge following a heart attack, more than one-third of (PEEK) patients will develop heart failure indicated that other heart conditions, specifically heart attack are a Patient Experience, Expectations and Knowledge significant risk factor [5]. It was also noted that 75% of (PEEK) is a research program developed by the heart failure cases had antecedent hypertension [5]. International Centre for Community-Driven Research Diabetes is estimated to increase the risk of heart (CCDR). The aim of PEEK is to conduct patient failure by twofold in men and up to fivefold in women experience studies across several disease areas using [5]. An analysis of GP encounters confirms these risk a protocol that will allow for comparisons over time factors with most patients managing heart failure had (both quantitative and qualitative components). PEEK accompanying health conditions of high blood studies give us a clear picture and historical record of pressure and diabetes indicating a clear association what it is like to be a patient at a given point in time, [7]. and by asking patients about their expectations, PEEK studies give us a way forward to support patients and There is presently no reliable method for collecting their families with treatments, information and care. incidence of chronic heart failure in Australia, estimates use hospitalisations and mortality data The research protocol used in PEEK studies is which fail to include less severe forms that do not independently driven by CCDR. PEEK studies include a require hospitalisations [6]. The National Heart quantitative and qualitative component. The Foundation of Australia (NHF) and Cardiac Society of quantitative component is based on a series of Australia and New Zealand (CSANZ) estimated that at validated tools. The qualitative component is the least 300,000 Australians have chronic heart failure result of two years of protocol testing by CCDR to with 30,000 new cases diagnosed each year [7]. In develop a structured interview that solicits patient contrast, the Australian Bureau (ABS) of Statistics experience data and provides patients with the estimated that 112,000 people in Australia are living opportunity to provide advice on what they would like 19 Chronic Heart Failure 2017 Australian PEEK Study Section 1 to see in relation to future treatment, information modified Cancer Care Coordination Questionnaire for and care. The structured interview has also been Patients (CCCQ) (Young et al 20112), the Short Fear of designed so that the outcomes of PEEK studies can Progression Questionnaire (FOP12) (Hinz et al3), and inform policy, research, care, information, supportive the Partners in Health version 2 (PIH) (Petrov 2010)4. care services and advocacy efforts. In addition investigator derived questions about demographics, diagnosis, treatment received and Methodology future treatment decisions making were included.

Participants Structured Interview (qualitative)

To be eligible for the study, participants needed to Interviews were conducted via telephone by a have been diagnosed with heart failure (all classes of registered nurse or researcher with a background in disease were included to allow for comparisons), have psychology, who were trained in qualitative research. experienced the healthcare system in Australia, be 18 The first set of interview questions guided the patient years of age or older, be able to speak English, and be through their whole experience from when symptoms able to give consent to participate in the study. were noticed up to the present day. Recruitment commenced in September 2017. Participants were recruited between September and The next set of questions allowed patients to reflect November via email and Facebook through CCDR and on what they would like to see in the future in study partners Heart Support Australia and relation to treatment and care, and asked them what Hearts4Heart. their messages to decision-makers would be about the care and treatment patients with their condition Ethics receive. The interview also asks patients about the advice they would give to others recently diagnosed Ethics approval for this study was granted (as a low or with their condition or disease. All interviews were negligible risk research study) by the Centre for recorded and transcribed verbatim. Community-Driven Research Ethics Committee (Reference CS_Q4_03). Questionnaire analysis

Data collection Statistical analysis was conducted using R included in the packages “car”, “dplyr” and “ggplot2” (R 3.3.3 GUI Data for the online questionnaire was collected using 1.69 Mavericks build (7328). The aim of the statistical Zoho Survey (Zoho Corporation Pvt. Ltd. Pleasanton, analysis of the SF36, CCCQ, FOP12, and PIH responses California, USA, www.zoho.com/survey). Participants was to identify variations by respondent type (by CHF completed the survey from September to November class, and by location), and by co-morbidity or 2017. symptom type (hyperkalemia status, hypertension status, sleep problem status and anxiety status). There were six researchers who conducted telephone Global scales and sub scales were calculated (1,3,4) interviews and used standardised prompts according to reported instructions. For throughout the interview. The interviews were comparisons by CHF class, a one-way analysis of recorded and transcribed verbatim. Identifying variance (ANOVA) analysis was conducted. A Tukey names and locations were not included in the HSD test was used post-hoc to identify the source of transcript. All transcripts were checked against the any differences identified in the one-way ANOVA test. original recording for quality assurance. Data was collected from September to November 2 2017. Young et al. Measuring cancer care coordination: development and validation of a questionnaire for patients. BMC Cancer. 2011; 11: 298. Published online 2011 Jul 15. doi: 10.1186/1471-2407-11-298 Online questionnaire (quantitative) 3 Hinz et al. Fear of progression in patients 6 months after cancer rehabilitation-a- validation study of the fear of progression The online questionnaire consisted of the 36-Item questionnaire FoPQ-12. Support Care Cancer. 2015 Jun;23(6):1579- 1 87. doi: 10.1007/s00520-014-2516-5. Epub 2014 Nov 21. Short Form Health Survey (SF36) (RAND Health) , a 4 Petkov J, Harvey P, Battersby M. The internal consistency and construct validity of the partners in health scale: validation of a patient rated chronic condition self-management measure. Qual Life 1 36-Item Short Form Survey (SF-36) Scoring instructions Res. 2010 Sep;19(7):1079-85. doi: 10.1007/s11136-010- 9661-1. Epub https://www.rand.org/health/surveys_ tools/mos/36-item-short- 2010 May 1. form/scoring.html 20 Chronic Heart Failure 2017 Australian PEEK Study Section 1 Where the assumptions for the one-way ANOVA were Position of this study not met, a Kuskal-Wallis rank sum test on care was conducted with post hoc pairwise comparisons using A search was conducted in Pubmed to identify CHF Wilcoxon rank sum test. For all other comparisons, a quality of life or patient experience studies that had two-sample t-test was used when assumptions for been conducted in the past ten years in Australia normality and variance were met, or when (Table 1.1). assumptions were not met, a Wilcoxon rank sum test with continuity correction was used. Previously in Australia, there have been few studies that explore extensively the patient experience and Questions where participants were asked to rank quality of life of people with CHF. preferences were analysed using weighted averages. Weights were applied in reverse, the most preferred Eighteen studies were identified with patient reported option was given the largest weight equal to the experience or quality of life. Seven studies used number of options, the least preferred option was qualitative methods with a range of nine to 44 given the lowest weight of 1. participants, these studies explored general patient experience[12, 13], Indigenous Australians[14, 15], Structured interviews analysis care models[16], motivation[17], and economic impact[18]. Eleven studies that collected quantitative A content analysis was conducted using conventional data with a range of 6 to 280 participants were analysis to identify major themes from structured identified, all studies collected HRQOL. For six studies interviews. Text from the interviews were read line- HRQOL was the only patient reported data, [19-24], by-line by the lead researcher and then imported into two studies collected additional depression data [25, NVivo 8 (QSR International). Each question within the 26], two studies study collected additional urinary interview was individually analysed. Initial categories incontinence[27, 28], one collected medication and definitions were identified and registered in compliance[28], and another resilience data[29]. NVivo. The minimum coded unit was a sentence however there were also paragraphs and phrases that In this PEEK study, 50 people throughout Australia were coded as a unit. participated in the study that included a structured interview and quantitative questionnaire. This study A second researcher verified the codes and in CHF is therefore the largest mixed methodology definitions, and the text was coded until full study in Australia. In addition, PEEK is a agreement was reached using the process of comprehensive study covering all aspects of disease consensual validation. Where a theme occurred less experience from symptoms, diagnosis, treatment, than 5 times it was not included in the study results. healthcare communication, information provision, care and support, quality of life, and future treatment Data analysis and final reporting was completed on 20 and care expectations. December 2017.

Sub-group analysis

Within the study, participants were asked whether they had any co-morbidities. Where there were 24 or more participants with a specific condition, these were included in a sub-analysis. In the case of this study, conditions included arthritis, arrhythmias, hypertension and sleep problems. There were five participants with hyperkalaemia that were also reported but not discussed in this PEEK study. These are discussed separately in a PEEK special report on hyperkalaema (available at www-cc-dr.org). Where there was a variation in results that were statistically significant (for the quantitative data) or +/- 10% variation in responses compared to the general cohort (quantitative data), these were reported.

21 Chronic Heart Failure 2017 Australian PEEK Study Section 1

Table 1.1: Comparative studies Author/Year Study Focus Qualitative Quantitative Aspin et al, 2012[14] Indigenous Australians n=11 CHF, interviews Nil Whitty et al 2012[16] Care model n=12 CHF participants, Nil interview Mirezaei et al, 2013[12] Patient experience n=15 CHF participants, Nil interviews Jeon et al, 2009[18] Economic impact of chronic n=20 CHF participants, Nil disease interview Jowsey et al, 2014[17] Motivation of health service n=20 CHF participants, Nil users interview Ward et al, 2011[15] Indigenous Australians n=44 CHF Nil Corcoran et al, 2013[13] Patient experience n=9 CHF participants, Nil interview Bird et al 2010[19] Model of Care Nil n=89, Minnesota Living with Heart Failure (MLWHF), Butterfield et al, 2008[24] Exercise Nil N=19, QoL unknown Davey et al, 2014[20] Indiginous Australian, Nil n=6 CHF, SF36, Chronic Rehabilitation Program Respiratory Disease Questionnaire Esmore et al, 2008[21] Device clinical trial Nil n=33, Rosser Utility Index Hwang et al, 2013[27] Urinary incontinence Nil n=89, Revised Urinary Incontinence Scale, Medication Adherence Report Scale, Incontinence Impact Questionnaire Short Form LeGrande et al, 2012[25] Quality of Life, Depression Nil n=190 Cardiac patients, Brief Illness Perceptions Questionnaire, Beck Depression Inventory, MacNew Health related Quality of Life Paul et al 2008[22] Domiciliary Oxygen Therapy Nil N= 10, QOL clinical trial Poole et at. 2017[28] Urinary incontinence Nil n=100, Questionnnaire for urinary incontinence diagnosis, International Consultation on Incontinence Questionnaire, Urge Incontinence Impact Questionnaire, Urge Urinary Distress Index, MLWHF, beliefs about medication compliance scale Smart and Steele, 2011[26] Exercise Nil n=23, MLWHF, Hare-Davis Cardiac Depression Scale, SF-36 Stewart et al, 2012[23] Care model Nil n=280, EQ5D, MLWHF Sun et al, 2014 [29] Exercise Nil n=70, SF12, General Health Questionnaire, and Resilience Scale

22 Chronic Heart Failure 2017 Australian PEEK Study Section 1 Abbreviations CCDR Centre for Community-Driven Research CHF Chronic Heart Failure DF DF Degrees of Freedom. The number of values in the final calculation of a statistic that are free to vary. EF Ejection Fraction is a measurement of the percentage of blood leaving your heart each time it contracts. 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. 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 Quality of LIfe W Kendall's W statistic (sometimes called the Coefficient of Concordance) is a non parametric statistic. It's used to assess agreement between different raters, and ranges from 0 to 1.

23 Chronic Heart Failure 2017 Australian PEEK Study Section 1 outcomes for people with chronic illness. BMC References Health Serv Res, 2013. 13: p. 251. 13. Corcoran, K.J., T. Jowsey, and S.R. Leeder, One size 1. AIHW, Australian Institute of Health and Welfare. does not fit all: the different experiences of those (2017). Deaths. Australian Government. Retrieved with chronic heart failure, type 2 diabetes and from: https://www.aihw.gov.au/reports/life- chronic obstructive pulmonary disease. Aust expectancy-death/deaths-in- Health Rev, 2013. 37(1): p. 19-25. australia/contents/leading-causes-of-death. 14. Aspin, C., et al., Strategic approaches to enhanced 2. NHF, National Heart Foundation of Australia. Heart health service delivery for Aboriginal and Torres failure factsheet. Retrieved from: Strait Islander people with chronic illness: a https://www.heartfoundation.org.au [Online: qualitative study. BMC Health Serv Res, 2012. 12: Accessed 30 November 2017]. p. 143. 3. AIHW, Australian Institute of Health and Welfare. 15. Ward, N.J., et al., With good intentions: complexity (2003). Heart failure: what of the future. Bulletin. in unsolicited informal support for Aboriginal and Retrieved from: https://www.aihw.gov.au [Online: Torres Strait Islander peoples. A qualitative study. Accessed 30 November 2017]. BMC Public Health, 2011. 11: p. 686. 4. Ramani, G., P. Uber, and M. Mehra, Chronic Heart

Failure: Contemporary Diagnosis and Management. Mayo Clin Proc, 2010. Feb; 85(2): p. 16. Whitty, J.A., et al., Patient preferences for the 180–195. delivery of disease management in chronic heart failure: a qualitative study. J Cardiovasc Nurs, 5. Ural, D., et al., Diagnosis and management of 2012. 27(3): p. 201-7. acute heart failure. Anatol J Cardiol. , 2016 Nov. 15(11): p. 860–889. 17. Jowsey, T., et al., What motivates Australian health service users with chronic illness to engage in self- 6. AIHW., Australian Institute of Health and Welfare management behaviour? Health Expect, 2014. 2016. Australia’s health 2016. Australia’s health 17(2): p. 267-77. series no. 15. Cat. no. AUS 199. Canberra: AIHW. 18. Jeon, Y.H., et al., Economic hardship associated 7. NHF/CSANZ, National Heart Foundation of with managing chronic illness: a qualitative Australia and the Cardiac Society of Australia and inquiry. BMC Health Serv Res, 2009. 9: p. 182. New Zealand. (2011). Guidelines for the prevention, detection and management of chronic 19. Bird, S., M. Noronha, and H. Sinnott, An integrated heart failure in Australia. Updated October 2011. care facilitation model improves quality of life and Retrieved from: reduces use of hospital resources by patients with https://www.heartfoundation.org.au [Online: chronic obstructive pulmonary disease and chronic Accessed 30 November 2017]. heart failure. Aust J Prim Health, 2010. 16(4): p. 326-33. 8. ABS., Australian Bureau of Statistics 2017, National Health Survey: First Results, 2014-15 , 'Table 3: 20. Davey, M., W. Moore, and J. Walters, Tasmanian Long-term health conditions - Australia', data Aborigines step up to health: evaluation of a cube: Excel spreadsheet, cat. no. 4364.0.55.001, cardiopulmonary rehabilitation and secondary viewed 20 December 2017, prevention program. BMC Health Serv Res, 2014. http://www.abs.gov.au. 14: p. 349. 9. ABS., Australian Bureau of Statistics 2017, Causes 21. Esmore, D., et al., A prospective, multicenter trial of death, Australia, 2016, 'Table 1: Underlying of the VentrAssist left ventricular assist device for causes of death - Australia', data cube: Excel bridge to transplant: safety and efficacy. J Heart spreadsheet, cat. no. 3303.0, viewed 20 December Lung Transplant, 2008. 27(6): p. 579-88. 2017, http://www.abs.gov.au. 22. Paul, B., M. Joseph, and C.G. De Pasquale, 10. AIHW, Australian Institute of Health and Welfare. Domiciliary oxygen therapy improves sub-maximal (2011). Cardiovascular disease. Australian facts exercise capacity and quality of life in chronic 2011. Australian Government. Retrieved from: heart failure. Heart Lung Circ, 2008. 17(3): p. 220- https://www.aihw.gov.au [Online: Accessed 30 3. November 2017]. 23. Stewart, S., et al., Impact of home versus clinic- 11. Dolgin, M., et al., New York Heart Association. based management of chronic heart failure: the Criteria Committee. Nomenclature and criteria for WHICH? (Which Heart Failure Intervention Is Most diagnosis of diseases of the heart and great Cost-Effective & Consumer Friendly in Reducing vessels. 9th ed. Boston, MA: Lippincott Williams Hospital Care) multicenter, randomized trial. J Am and Wilkins; March 1, 1994. Coll Cardiol, 2012. 60(14): p. 1239-48. 12. Mirzaei, M., et al., A patient-centred approach to health service delivery: improving health

24 Chronic Heart Failure 2017 Australian PEEK Study Section 1 24. Butterfield, J.A., et al., Exercise training in patients with stable chronic heart failure: effects on thoracic impedance cardiography and B-type natriuretic peptide. J Cardiopulm Rehabil Prev, 2008. 28(1): p. 33-7. 25. Le Grande, M.R., et al., Identifying illness perception schemata and their association with depression and quality of life in cardiac patients. Psychol Health Med, 2012. 17(6): p. 709-22. 26. Smart, N.A. and M. Steele, A comparison of 16 weeks of continuous vs intermittent exercise training in chronic heart failure patients. Congest Heart Fail, 2012. 18(4): p. 205-11. 27. Hwang, R., et al., Frequency of urinary incontinence in people with chronic heart failure. Heart Lung, 2013. 42(1): p. 26-31. 28. Poole, K., M. Kerlin, and R. Wynne, Prevalence and characteristics of urinary incontinence in a cohort of patients with chronic heart failure. Heart Lung, 2017. 46(2): p. 67-73. 29. Sun, J., N. Buys, and R. Jayasinghe, Effects of community-based meditative Tai Chi programme on improving quality of life, physical and mental health in chronic heart-failure participants. Aging Ment Health, 2014. 18(3): p. 289-95.

25 Chronic Heart Failure 2017 Australian PEEK Study Section 2 Section 2 Demographics

Chronic Heart Failure 2017 Australian PEEK Study Section 2

Section 2: Demographics and study population characteristics Summary • Fifty participants from Australia were included in the study. • Participants included all NYHA classes with 6 Class I (12.00%), 9 Class II (18.00%), 32 Class III (64.00%), and 3 Class IV (6.00%). • Participants came from NSW (34.00%), Queensland (28.00%), Victoria (22.00%), Western Australia (10.00%) and South Australia (6.00%); from major cities (58.00%), inner regional (32.00%), and outer regional (6.00%). • Thirty-four females (64.00%) and 14 males (28.00%) were included in this study. • In addition to CHF, 34 had sleep problems (64.00%), 24 had arthritis (48.00%), 24 had arrhythmia (48.00%), 24 had hypertension (48.00%), and 5 participants had a hyperkalemia diagnosis (10.00%). These were included for sub-group analysis throughout the study. • The SF36 scores for the entire cohort were good for role limitations due to emotional problems, emotional well-being, and social functioning; the scores for physical functioning, energy/fatigue, pain and health change were moderate. The general health scale was poor and role limitations due to physical function was very poor. • Participants with NHYA classes I and II had higher scores for the SF36 physical functioning, role limitations due to physical health, role limitations due to emotional health, energy/fatigue, emotional well-being, social functioning and general health subscales, compared with NHYA class III and IV. • Participants without sleep problems had higher scores for the physical functioning, role limitations due to physical health, role limitations due to emotional problems, energy/fatigue, social functioning, general health, and health change subscales, compared with those with sleep problems. • Participants with hypertension had lower scores for the health change subscale compared with those without. • No differences in SF36 subscales were observed for those that lived in major cities compared to those that live in regional areas, arthritis status, arrhythmia status or hyperkalaemia status.

27 Chronic Heart Failure 2017 Australian PEEK Study Section 2 Demographics class of I to IV. In addition to CHF, 34 had sleep problems (64.00%), 24 had arthritis (48.00%), 24 had Fifty participants form Australia were recruited into arrhythmia (48.00%), 24 had hypertension (48%), and the study, including 35 females (70.00%) and 15 males 5 participants had a hyperkalemia diagnosis (10.00%). (30.00%). The majority of participants were from These were included for sub-group analysis NSW (n=17, 34.00%), Queensland (n=14, n=28.00%), throughout the study. Demographics of participants and Victoria (n=11, 22.00%), and most live in major are available in Table 2.1. cities (n=29, 58.00%). Participants had a current NYHA

Table 2.1: Demographics Characteristic n= Percentage of Particpants Study participants n=50 CHF and Hyperkalemia 5 10.00 CHF only 45 90.00 CHF class n=50 Class I 6 12.0 0 Class II 9 18.00 Class III 32 64.00 Class IV 3 6.00 Location: State n=50 New South Wales 17 34.0 0 Queensland 14 28.00 Victoria 11 22.00 Western Australia 5 10.00 South Australia 3 6.00 Geographical location n=50 Major City 29 58.0 0 Inner Regional 16 32.00 Outer Regional 5 6.00 Social Economic Indexes for Areas n=50 (1= most disadvantaged) 1 3 6.0 0 2 1 2.00 3 3 6.00 4 7 14.00 5 4 8.00 6 6 12.00 7 3 6.00 8 9 18.00 9 7 14.00 10 7 14.00

Chronic Heart Failure 2017 Australian PEEK Study 28 Section 2 Characteristic n= Percentage of Participants Gender n=50 Female 35 70.00 Male 15 30.00 Age of participant n=50 25-34 1 2.0 0 35-44 10 10.00 45-54 13 26.00 55-64 12 24.00 65-74 10 20.00 75-84 4 8.00 Birth country n=48 Australia 46 95.83 New Zealand 1 4.17 Phillipines 1 4.17 Race n=50 Caucasian - White 44 88.0 0 Asian 4 8.00 Indigenous Australian 1 2.00 Australian 1 2.00 Highest level of education obtained n=49 Less than High School degree 4 8.16 Some College but no degree 7 14.29 Trade 5 10.20 Associate degree 7 14.29 Bachelor Degree 10 20.41 Graduate degree 2 4.08 High school degree or equivalent 14 28.57 My health Record Access n=50 No 21 42.0 0 Yes 12 24.00 I Don't know what "My health record" is 11 22.00 Not Sure 6 12.00

My health Record Use n=12 Very good 2 16.67 Good 2 16.67 Acceptable 5 41.67 Poor 2 16.67 Very Poor 1 8.33

Chronic Heart Failure 2017 Australian PEEK Study 29 Section 2 Characteristic n= Percentage of Participants Employment status n=50 Retired 20 40.0 0 Disabled, not able to work 12 24.00 Employed, working full time 5 10.00 Employed, working part time 5 10.00 Currently receiving Centrerlink support 3 6.00 Looking for work 2 4.00 Currently receiving Centrelink support,Retired 2 4.00 Full time/part time study 1 2.00 Carer status n=50 Children 5 10.0 0 Grandchildren 3 6.00 Spouse/partner 2 4.00 I am not a carer 40 80.00 Number of children under 18 n=50 0 41 82.0 0 1 5 10.00 2 3 6.00 3 1 2.00 Religion n=47 No Religion 20 42.55 Christianity 17 36.17 Protestantism 4 8.51 Buddhism, Christianity 2 4.26 Catholicism 2 4.26 Buddhism 1 2.13 Pagan 1 2.13 Interest in politics n=45 Extremely interested 1 2.22 Very Interested 6 13.33 Moderately Interested 22 48.89 Slightly interested 12 26.67 Not at all interested 4 8.89 Political leaning n=44 Extremely left 1 2.27 Moderately left 6 13.64 Slightly left 3 6.82 Neither 28 63.64 Slightly right 0 0.00 Moderately right 5 11.36 Extremely right 1 2.27 Relationship status n=50 Married 29 58.00 Single 6 12.00 Widow 5 10.00 Divorced 4 8.00 Not married, but co-habitating with a significant other 4 8.00 In a domestic partnership or civil union 1 2.00 Separated 1 2.00

Chronic Heart Failure 2017 Australian PEEK Study 30 Section 2

Baseline health 12.50) pain (Median=57.50, IQR = 32.50) and health change (Median = 50.0, IQR = 50.00) were in the The Short Form Health Survey 36 (SF36) measures middle quintile indicating moderate scores. The baseline health, or the general health of an individual. general health scale had a median score The SF36 comprises nine sub scales: physical (Median=35.00, IQR = 30.00) in the second lowest functioning, role limitations due to physical health, quintile indicating poor general health. Role role limitations due to emotional problems, energy limitations due to physical functioning has a median in and fatigue, emotional well-being, social function, the lowest quintile (Median = 0.00, IQR = 68.75), pain, general health, and health change from one year indicating very poor role limitations due to physical ago. A higher score denotes a better health/function. functioning. Summary statistics for the entire cohort are displayed Comparisons of SF36 have been made based on NYHA alongside the possible range of each scale in Table class (Figures 2.1 to 2.9, Tables 2.3 to 2.4), location 2.2, where the scale has a normal distribution mean (Figures 2.10 to 2.18, Tables 2.5 to 2.6), sleep problem and sd are used as a central measure, otherwise the status (Figures 2.19 to 2.27, Tables 2.7 to 2.8), median and IQR are used. The overall scores for the arthritis status (Figures 2.28 to 2.36, Tables 2.9 to cohort were in the second highest quintile for role 2.10), arrhythmia status (Figures 2.37 to 2.45, Tables limitations due to emotional problems 2.11 to 2.12), hypertension status (Figures 2.46 to (Median=64.00, IQR=91.67), emotional well-being 2.54, Tables 2.13 to 2.14), and hyperkalaemia status (M=68.24, sd=18.77), social functioning (Figures 2.55 to 2.63, Tables 2.15 to 2.16). (Median=62.50, IQR=25.00), indicating good scores for the cohort. The scores for physical functioning (M=46.60, sd=29.18), energy/fatigue (M=42.10, SD =

Table 2.2: SF36 all participants

Scale Mean SD Median IQR Possible range

Physical functioning* 46.60 29.18 50.00 50.00 0-100

Role limitations die to 30.00 39.77 0.00 68.75 0-100 physical health

Role limitations due to 64.00 43.56 64.00 91.67 0-100 emotional problems

Energy/fatigue* 42.1 12.50 40.00 15.00 0-100

Emotional well-being* 68.24 18.77 72.00 27.00 0-100

Social functioning 57.50 26.61 62.50 25.00 0-100

Pain 60.45 25.30 57.50 32.50 0-100

General health 36.30 21.87 35.00 30.00 0-100

Health change 48.50 28.31 50.00 50.00 0-100

*Normal distribution use mean and SD

Chronic Heart Failure 2017 Australian PEEK Study 31 Section 2 Comparisons of SF36 sub scales by CHF class and those with NHYA class III and IV (Median=25.00, IQR =40.00) W=430.00, p=0.0004 (Table 2.4); SF36 Comparisons of SF36 sub scales were made between Role limitations due to physical health sub-scale for participants by NYHA class I and II, and NYHA class III participants with NHYA class I and II (Median=25.00, and IV. A two-sample t-test was used when IQR =87.50) compared to those with NHYA class III assumptions for normality and variance were met and IV (Median=0.0, IQR =25.0), W=377.50, p=0.0080 (Table 2.3), or when assumptions for normality and (Table 2.4); SF36 Role limitations due to emotional variance were not met, a Wilcoxon rank sum test with problems sub-scale for participants with NHYA class I continuity correction was used (Table 2.4). A two- and II (Median=100.00, IQR =0.00) compared to those sample t-test indicated a significant difference in SF36 with NHYA class III and IV (Median=66.67, IQR Energy/Fatigue subscale between participants with =100.00), W=373.00, p=0.0103 (Table 2.4); SF36 social NYHA class I and II (M=49.33, SD=13.74) and those functioning sub-scale for participants with NHYA class with NHYA class III and IV (M=39.00, SD=10.70), t(48) I and II (Median=75.00, IQR =12.50) compared to = 2.87, p=0.0061 (Table 2.3); and a significant those with NHYA class III and IV (Median=50.00, IQR difference between SF36 Emotional Well-being =25.00), W=396.50, p=0.0042 (Table 2.4); and SF36 subscale between participants with NYHA class I and II General health sub-scale for participants with NHYA (M=77.07, SD=14.14) and those with NHYA class III class I and II (Median=50.00, IQR =15.00) compared to and IV (M=64.46, SD=19.40), t(48) = 2.27, p=0.0279 those with NHYA class III and IV (Median=25.00, IQR (Table 2.3). =20.00), W=412.50, p=0.0015 (Table 2.4). There were A Wilcoxon rank sum test with continuity correction no significant differences between the two groups for was revealed a significant difference for the SF36 SF36 Social functioning, Pain or Health change sub- Physical function, the median scores for participants scales (Table 2.4). with NYHA class I and II (Median=70.00, IQR =20.00)

SF36 Physical Functioning SF36 Role Limitations Due to Physical Health 100 100 80 80 60 60 40 40 20 20 0 0

NYHA 1 and 2 NYHA 3 and 4 NYHA 1 and 2 NYHA 3 and 4

Figure 2.1: Boxplot of SF36 physical functioning by CHF Figure 2.2: Boxplot of SF36 role limitations due to class physical health by CHF class

Chronic Heart Failure 2017 Australian PEEK Study 32 Section 2

SF36 Role Limitations Due to Emotional Problems SF36 Energy/Fatigue 100 70 80 60 50 60 40 40 30 20 20 0 10

NYHA 1 and 2 NYHA 3 and 4 NYHA 1 and 2 NYHA 3 and 4

Figure 2.3: Boxplot of SF36 role limitations due to Figure 2.4: Boxplot of SF36 energy/fatigue by CHF class emotional problems by CHF class

SF36 Emotional Well-being SF36 Social Functioning 100 100 80 80 60 60 40 40 20 0

NYHA 1 and 2 NYHA 3 and 4 NYHA 1 and 2 NYHA 3 and 4

Figure 2.5: Boxplot of SF36 emotional well-being by 2.6: Boxplot of SF36 social functioning by CHF class CHF class

Chronic Heart Failure 2017 Australian PEEK Study 33 Section 2

SF36 Pain SF36 General Health 100 80 80 60 60 40 40 20 20

NYHA 1 and 2 NYHA 3 and 4 NYHA 1 and 2 NYHA 3 and 4

Figure 2.7: Boxplot of SF36 pain by CHF class 2.8: Boxplot of SF36 general health by CHF class

SF36 Health Change 100 80 60 40 20 0

NYHA 1 and 2 NYHA 3 and 4

Figure 2.9: Boxplot of SF36 health change by CHF class

Table 2.3: Summary statistics and two sample t-test SF36 subscales by NYHA class SF36 subscale Group Count Mean SD T df P Energy/Fatigue NYHA I and II 15 49.33 13.74 2.87 48 0.0061* NHYA III and IV 35 39.00 10.70 Emotional Well- NYHA I and II 15 77.07 14.14 2.27 48 0.0279* Being NHYA III and IV 35 64.46 19.40 * Statistically significant at p<0.05

Table 2.4: Summary statistics Wilcoxon rank sum test with continuity correction SF36 subscales by NYHA class SF36 subscale Group Count Median IQR W P Physical functioning NYHA I and II 15 70.00 20.00 430.00 0.0004* NHYA III and IV 35 25.00 40.00

Chronic Heart Failure 2017 Australian PEEK Study 34 Section 2 Role limitations due to NYHA I and II 15 25.00 87.50 377.50 0.0080* physical health NHYA III and IV 35 0.00 25.00 Role limitations due to NYHA I and II 15 100.00 0.00 373.00 0.0103* emotional problems NHYA III and IV 35 66.67 100.00 Social functioning NYHA I and II 15 75.00 12.50 396.50 0.0042* NHYA III and IV 35 50.00 25.00 Pain NYHA I and II 15 57.50 32.50 263.00 1.0000 NHYA III and IV 35 65.00 45.00 General Health NYHA I and II 15 50.00 15.00 412.50 0.0015* NHYA III and IV 35 25.00 20.00 Health change NYHA I and II 15 50.00 12.50 316.00 0.2400 NHYA III and IV 35 50.00 50.00

Chronic Heart Failure 2017 Australian PEEK Study 35 Section 2

Comparisons of SF36 sub scales by location normality and variance were not met, a Wilcoxon rank sum test with continuity correction was used (Table Comparisons of SF36 subscales were made between 2.6). No statistically significant differences were those that live in a major city compared with those observed between these two groups for any SF36 sub that live in regional areas. A two-sample t-test was scale (Tables 2.5 and 2.6). used when assumptions for normality and variance were met (Table 2.5), or when assumptions for

SF36 Physical Functioning SF36 Role Limitations due to Physical Health 100 100 80 80 60 60 40 40 20 20 0 0

City Regional City Regional

Figure 2.10: Boxplot of SF36 physical functioning by Figure 2.11: Boxplot of SF36 role limitations due to location physical health by location

SF36 Role Limitations due to Emotional Problems SF36 Energy/Fatigue 100 70 80 60 50 60 40 40 30 20 20 0 10

City Regional City Regional

Figure 2.12: Boxplot of SF36 role limitations due to Figure 2.13: Boxplot of SF36 energy/fatigue by location emotional problems by location

Chronic Heart Failure 2017 Australian PEEK Study 36 Section 2

SF36 Emotional Well-being SF36 Social Functioning 100 100 80 80 60 60 40 40 20 0

City Regional City Regional

Figure 2.14: Boxplot of SF36 emotional well-being by Figure 2.15: Boxplot of SF36 social functioning by location location

SF36 Pain SF36 General Health 100 80 80 60 60 40 40 20 20

City Regional City Regional

Figure 2.16: Boxplot of SF36 pain by location Figure 2.17: Boxplot of SF36 general health by location

Chronic Heart Failure 2017 Australian PEEK Study 37 Section 2

SF36 Health Change 100 80 60 40 20 0

City Regional

Figure 2.18: Boxplot of SF36 health change by location

Table 2.5: Summary statistics and two sample t-test SF36 subscales by location SF36 subscale Group Count Mean SD t df p Energy/Fatigue Major City 29 43.28 11.75 0.78 48 0.4400 Regional Area 21 40.48 13.59 Emotional Well- Major City 29 67.72 16.49 -0.23 48 0.8220 Being Regional Area 21 68.95 21.94 Social functioning Major City 29 60.78 27.49 1.02 48 0.3112 Regional Area 21 52.98 25.28

Table 2.6: Summary statistics Wilcoxon rank sum test with continuity correction SF36 subscales by location SF36 subscale Group Count Median IQR W p Physical functioning Major City 29 55.0 45.00 352.50 0.3493 Regional Area 21 30.0 60.00 Role limitations due to Major City 29 0.00 75.00 317.50 0.7877 physical health Regional Area 21 0.00 50.00 Role limitations due to Major City 29 100.00 66.67 328.0 0.6183 emotional problems Regional Area 21 66.67 100.00 Pain Major City 29 57.50 32.50 342.50 0.4578 Regional Area 21 57.50 55.00 General Health Major City 29 30.0 30.00 239.50 0.2033 Regional Area 21 5.00 30.00 Health change Major City 29 50.00 25.00 258.50 0.3531 Regional Area 21 50.00 50.00

Chronic Heart Failure 2017 Australian PEEK Study 38 Section 2 Comparisons of SF36 sub scales by sleep problem those without (Median=72.50, IQR =32.50) W=412.50, status p=0.0035 (Table 2.7); SF36 Role limitations due to physical health sub-scales for participants with sleep Comparisons of SF36 sub scales were made between problems (Median=0.00, IQR =25.00) compared to participants with and without sleep problems. A two- those without (Median=75.00, IQR =100.00), sample t-test was used when assumptions for W=391.50, p=0.0067 (Table 2.8); SF36 Social normality and variance were met (Table 2.7), or when functioning sub-scale for those with sleep problems assumptions for normality and variance were not met, (Median=50.00, IQR =25.00) compared to those a Wilcoxon rank sum test with continuity correction without (Median=75.00, IQR =37.50), W=376.50, was used (Table 2.8). A two-sample t-test indicated a p=0.0284 (Table 2.8); SF36 general health sub-scale significant difference in SF36 Energy/Fatigue subscale for those with sleep problems (Median=30.00, IQR between participants with sleep problems (M=39.41, =27.50) compared to those without (Median=45.00, SD=10.85) and those without (M=47.81, SD=14.14), IQR =26.25), W=383.50, p=0.0205 (Table 2.8); and t(48) = 2.31, p=0.0250 (Table 2.7). SF36 health change sub-scale for those with sleep Wilcoxon rank sum tests with continuity corrections problems (Median=25.00, IQR =25.00) compared to revealed a significant difference for the SF36 Physical those without (Median=50.00, IQR =25.00), function, the median scores for participants with W=392.00, p=0.0099 (Table 2.8). sleep problems (Median=32.50, IQR =38.75) and

SF36 Physical Functioning SF36 Role limitations due to physical health 100 100 80 80 60 60 40 40 20 20 0 0

No sleep problems Sleep problems No sleep problems Sleep problems

Figure 2.19: Boxplot of SF36 physical functioning by Figure 2.20: Boxplot of SF36 role limitations due to sleep problem status physical health by sleep problem status

Chronic Heart Failure 2017 Australian PEEK Study 39 Section 2

SF36 Role limitations due to emotional problems SF36 Energy/fatigue 100 70 80 60 50 60 40 40 30 20 20 0 10

No sleep problems Sleep problems No sleep problems Sleep problems

Figure 2.21: Boxplot of SF36 role limitations due to Figure 2.22: Boxplot of SF36 energy/fatigue by sleep emotional problems by sleep problem status problem status

SF36 Emotional well-being SF36 Social functioning 100 100 80 80 60 60 40 40 20 0

No sleep problems Sleep problems No sleep problems Sleep problems

Figure 2.23: Boxplot of SF36 emotional well-being by 2.24: Boxplot of SF36 social functioning by sleep problem sleep problem status status

Chronic Heart Failure 2017 Australian PEEK Study 40 Section 2

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

No sleep problems Sleep problems No sleep problems Sleep problems

Figure 2.25: Boxplot of SF36 pain by sleep problem 2.26: Boxplot of SF36 general health by sleep problem status status

SF36 Health change 100 80 60 40 20 0

No sleep problems Sleep problems

Figure 2.27: Boxplot of SF36 health change by sleep problem status

Chronic Heart Failure 2017 Australian PEEK Study 41 Section 2

Table 2.7: Summary statistics and Two sample t-test of SF36 subscales by sleep status

SF36 sub-scale Group Count Mean SD t Df P

Energy/Fatigue No sleep 16 47.81 14.14 2.31 48 0.0250* problems

Sleep problems 34 39.41 10.85

Emotional well No sleep 16 68.25 18.21 0.0023 48 0.9980 being problems

Sleep problems 34 68.24 19.30

*Statistically significant p-value at p<0.05

Table 2.8 :Summary statistics Wilcoxon rank sum test with continuity correction of SF36 subscales by sleep problem status

SF36 sub-scale Group Count Median IQR W P

Physical functioning No sleep problems 16 72.50 32.50 412.50 0.0035*

Sleep problems 34 32.50 38.75

Role limitations due to No sleep problems 16 75.00 100.0 391.50 0.0067* physical health Sleep problems 34 0.00 25.00

Role limitations due to No sleep problems 16 100.00 75.00 278.00 0.8997 emotional problems Sleep problems 34 100.00 91.67

Social functioning No sleep problems 16 75.00 37.50 376.50 0.0284*

Sleep problems 34 50.00 25.00

Pain No sleep problems 16 68.75 35.63 338.50 0.1668

Sleep problems 34 56.25 41.88

General health No sleep problems 16 45.00 26.25 383.50 0.0205*

Sleep problems 34 30.00 27.50

Health Change No sleep problems 16 50.00 25.00 392.00 0.0099*

Sleep problems 34 25.00 25.00

*Statistically significant p-value at p<0.05

Chronic Heart Failure 2017 Australian PEEK Study 42 Section 2 Comparisons of SF36 sub scales by arthritis status assumptions for normality and variance were not met, a Wilcoxon rank sum test with continuity correction Comparisons of SF36 sub scales were made between was used (Table 2.10). No statistically significant participants with and without hypertension. A two- differences were observed between these two groups sample t-test was used when assumptions for for any SF36 sub scale (Tables 2.9 and 2.10). normality and variance were met (Table 2.9), or when

SF36 Physical health SF36 Role limitations due to physical health 100 100 80 80 60 60 40 40 20 20 0 0

No arthritis Arthritis No arthritis Arthritis

Figure 2.28: Boxplot of SF36 physical functioning by Figure 2.29: Boxplot of SF36 role limitations due to arthritis status physical health by arthritis status

SF36 Role limitations due to emotional problems SF36 Energy/fatigue 100 70 80 60 50 60 40 40 30 20 20 0 10

No arthritis Arthritis No arthritis Arthritis

Figure 2.30: Boxplot of SF36 role limitations due to Figure 2.31: Boxplot of SF36 energy/fatigue by arthritis emotional problems by arthritis status status

Chronic Heart Failure 2017 Australian PEEK Study 43 Section 2

SF36 Emotional well-being SF36 Social functioning 100 100 80 80 60 60 40 40 20 0

No arthritis Arthritis No arthritis Arthritis

Figure 2.32: Boxplot of SF36 emotional well-being by 2.33: Boxplot of SF36 social functioning by arthritis arthritis status status

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

No arthritis Arthritis No arthritis Arthritis

Figure 2.34: Boxplot of SF36 pain by arthritis status 2.35: Boxplot of SF36 general health by arthritis status

Chronic Heart Failure 2017 Australian PEEK Study 44 Section 2

SF36 Health change 100 80 60 40 20 0

No arthritis Arthritis

Figure 2.36: Boxplot of SF36 health change by arthritis status

Chronic Heart Failure 2017 Australian PEEK Study 45 Section 2

Table 2.9: Summary statistics and two sample t-test of SF36 subscales by arthritis status

SF36 subscale Group Count Mean SD t df P

Energy/Fatigue No arthritis 26 43.65 12.53 0.91 48 0.3656

Arthritis 24 40.42 12.50

Social No arthritis 26 55.29 29.62 -0.61 48 0.5462 functioning Arthritis 24 59.90 23.31

Pain No arthritis 26 65.77 25.85 1.57 48 0.1229

Arthritis 24 54.69 23.89

Table 2.10: Summary statistics Wilcoxon rank sum test with continuity correction of SF36 subscales by arthritis status

SF36 subscale Group Count Median IQR W P

Physical functioning No arthritis 26 55.00 60.00 360.50 0.3501

Arthritis 24 42.50 41.25

Role limitations due to No arthritis 26 0.00 50.00 241.50 0.1363 physical health Arthritis 24 25.00 100.00

Role limitations due to No arthritis 26 83.33 100.0 276.00 0.4474 emotional problems Arthritis 24 100.00 66.67

Emotional Well-being No arthritis 26 72.00 24.00 263.00 0.3442

Arthritis 24 74.00 29.00

General health No arthritis 26 30.00 18.75 238.00 0.1521

Arthritis 24 40.00 36.25

Health change No arthritis 26 50.00 50.00 319.50 0.8878

Arthritis 24 50.00 25.00

Chronic Heart Failure 2017 Australian PEEK Study 46 Section 2 Comparisons of SF36 sub scales by arrhythmia status not met, a Wilcoxon rank sum test with continuity correction was used (Table 2.12). No statistically Comparisons of SF36 subscales were made between significant differences were observed between these those that with arrhythmia compared without. A two- two groups for any SF36 sub scale (Tables 2.11 and sample t-test was used when assumptions for 2.12). normality and variance were met (Table 2.11), or when assumptions for normality and variance were

SF36 Physical function SF36 Role limitations due to physical health 100 100 80 80 60 60 40 40 20 20 0 0

No arrhythmia Arrhythmia No arrhythmia Arrhythmia

Figure 2.37: Boxplot of SF36 physical functioning by Figure 2.38: Boxplot of SF36 role limitations due to arrhythmia status physical health by arrhythmia status

SF36 Role limitations due to emotional problems SF36 Energy/fatigue 100 70 80 60 50 60 40 40 30 20 20 0 10

No arrhythmia Arrhythmia No arrhythmia Arrhythmia

Figure 2.39: Boxplot of SF36 role limitations due to Figure 2.40: Boxplot of SF36 energy/fatigue by emotional problems by arrhythmia status arrhythmia status

Chronic Heart Failure 2017 Australian PEEK Study 47 Section 2

SF36 Emotional well-being SF36 Social functioning 100 100 80 80 60 60 40 40 20 0

No arrhythmia Arrhythmia No arrhythmia Arrhythmia

Figure 2.41: Boxplot of SF36 emotional well-being by 2.42: Boxplot of SF36 social functioning by arrhythmia arrhythmia status status

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

No arrhythmia Arrhythmia No arrhythmia Arrhythmia

Figure 2.43: Boxplot of SF36 pain by arrhythmia status 2.44: Boxplot of SF36 general health by arrhythmia status

Chronic Heart Failure 2017 Australian PEEK Study 48 Section 2

SF36 Heath change 100 80 60 40 20 0

No arrhythmia Arrhythmia

Figure 2.45: Boxplot of SF36 health change by arrhythmia status

Table 2.11: Summary statistics and Two sample t-test of SF36 subscales by arrhythmia status

SF36 sub-scale Group Count Mean SD t df P

General health No arrhythmia 26 38.85 23.93 0.85 48 0.3971

Arrhythmia 24 33.54 19.53

Table 2.12: Summary statistics Wilcoxon rank sum test with continuity correction of SF36 subscales by arrhythmia status SF36 subscale Group Count Median IQR W P Physical functioning No arrhythmia 26 57.50 58.75 375.00 0.2238 Arrhythmia 24 37.50 37.50 Role limitations due No arrhythmia 26 25.00 68.75 367.50 0.2417 to physical health Arrhythmia 24 0.00 37.50 Role limitations due No arrhythmia 26 100.00 58.33 348.00 0.4474 to emotional Arrhythmia 24 100.00 100.00 problems Energy/fatigue No arrhythmia 26 45.00 20.00 336.50 0.6378 Arrhythmia 24 40.00 10.00 Emotional Well-being No arrhythmia 26 74.00 37.00 367.50 0.2834 Arrhythmia 24 62.00 20.00 Social functioning No arrhythmia 26 68.75 34.38 407.00 0.0630 Arrhythmia 24 50.00 25.00 Pain No arrhythmia 26 56.25 45.00 277.50 0.5060 Arrhythmia 24 61.25 35.63 Health change No arrhythmia 26 50.00 43.75 389.00 0.1230 Arrhythmia 24 37.50 25.00

Chronic Heart Failure 2017 Australian PEEK Study 49 Section 2

Chronic Heart Failure 2017 Australian PEEK Study 50 Section 2

Comparisons of SF36 sub scales by hypertension A Wilcoxon rank sum test with continuity correction status was revealed a significant difference for the SF36 health change, the median scores for participants Comparisons of SF36 subscales were made between with hypertension (Median = 25.00, IQR = 25.00) and those that with hypertension compared without. A those without (Median=50.00, IQR=25.00), W=428.50, two-sample t-test was used when assumptions for p=0.0194 (Table 2.13); no other significant differences normality and variance were met (Table 2.13), or were observed (Tables 2.13 and 2.14). when assumptions for normality and variance were not met, a Wilcoxon rank sum test with continuity correction was used (Table 2.14).

SF36 Physical function SF36 Role limitations due to physical health 100 100 80 80 60 60 40 40 20 20 0 0

No hypertension Hypertension No hypertension Hypertension

Figure 2.46: Boxplot of SF36 physical functioning by Figure 2.47: Boxplot of SF36 role limitations due to hypertension status physical health by hypertension status

SF36 Role limitations due to emotional problems SF36 Energy/fatigue 100 70 80 60 50 60 40 40 30 20 20 0 10

No hypertension Hypertension No hypertension Hypertension

Figure 2.48: Boxplot of SF36 role limitations due to Figure 2.49: Boxplot of SF36 energy/fatigue by emotional problems by hypertension status hypertension status

Chronic Heart Failure 2017 Australian PEEK Study 51 Section 2

SF36 Emotional well-being SF36 Social functioning 100 100 80 80 60 60 40 40 20 0

No hypertension Hypertension No hypertension Hypertension

Figure 2.50: Boxplot of SF36 emotional well-being by 2.51: Boxplot of SF36 social functioning by hypertension hypertension status status

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

No hypertension Hypertension No hypertension Hypertension

Figure 2.52: Boxplot of SF36 pain by hypertension 2.53: Boxplot of SF36 general health by hypertension status status

Chronic Heart Failure 2017 Australian PEEK Study 52 Section 2

SF36 Health change 100 80 60 40 20 0

No hypertension Hypertension

Figure 2.54: Boxplot of SF36 health change by hypertension status

Table 2.13: Summary statistics and Two sample t-test of SF36 subscales by hypertension status

SF36 subscale Group Count Mean SD t df p

Physical No hypertension 26 51.15 31.19 1.15 48 0.2549 function Hypertension 24 41.67 26.61

Role limitations No hypertension 26 58.97 42.49 -0.85 48 0.4014 due to emotional Hypertension 24 69.44 44.95 problems

Social function No hypertension 26 58.17 26.21 0.18 48 0.8545

Hypertension 24 56.77 27.58

General Health No hypertension 26 38.85 22.60 0.85 48 0.3971

Hypertension 24 33.54 21.19

Chronic Heart Failure 2017 Australian PEEK Study 53 Section 2

Table 2.14 :Summary statistics Wilcoxon rank sum test with continuity correction of SF36 subscales by hypertension status SF36 subscale Group Count Median IQR W p Role limitations due to No 26 0.00 68.75 281.50 0.5231 physical health hypertension Hypertension 24 25.00 56.25 Energy/Fatigue No 26 42.50 15.00 354.50 0.4100 hypertension Hypertension 24 40.00 16.25 Emotional Well-being No 26 66.00 23.00 248.0 0.2156 hypertension Hypertension 24 76.00 29.00 Pain No 26 66.25 31.25 396.0 0.1024 hypertension Hypertension 24 45.00 45.00 Health change No 26 50.00 25.00 428.50 0.0194* hypertension Hypertension 24 25.00 25.00

*Statistically significant p-value at p<0.05

Chronic Heart Failure 2017 Australian PEEK Study 54 Section 2 Comparisons of SF36 sub scales by hyperkalaemia when assumptions for normality and variance were status not met, a Wilcoxon rank sum test with continuity correction was used (Table 2.16). No statistically Comparisons of SF36 subscales were made between significant differences were observed between these those that with hyperkalaemia compared without. A two groups for any SF36 sub scale (Tables 2.15 and two-sample t-test was used when assumptions for 2.16). normality and variance were met (Table 2.15), or

SF36 Physical function SF36 Role limitations due to physical health 100 100 80 80 60 60 40 40 20 20 0 0

No hyperkalaemia Hyperkalaemia No hyperkalaemia Hyperkalaemia

Figure 2.55: Boxplot of SF36 physical functioning by Figure 2.56: Boxplot of SF36 role limitations due to hyperkalaemia status physical health by hyperkalaemia status

SF36 Role limitations due to emotional problems SF36 Energy/fatigue 100 70 80 60 50 60 40 40 30 20 20 0 10

No hyperkalaemia Hyperkalaemia No hyperkalaemia Hyperkalaemia

Figure 2.57: Boxplot of SF36 role limitations due to Figure 2.58: Boxplot of SF36 energy/fatigue by emotional problems by hyperkalaemia status hyperkalaemia status

Chronic Heart Failure 2017 Australian PEEK Study 55 Section 2

SF36 Emotional well-being SF36 Social functioning 100 100 80 80 60 60 40 40 20 0

No hyperkalaemia Hyperkalaemia No hyperkalaemia Hyperkalaemia

Figure 2.59: Boxplot of SF36 emotional well-being by 2.60: Boxplot of SF36 social functioning by hyperkalaemia status hyperkalaemia status

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

No hyperkalaemia Hyperkalaemia No hyperkalaemia Hyperkalaemia

Figure 2.61: Boxplot of SF36 pain by hyperkalaemia 2.62: Boxplot of SF36 general health by hyperkalaemia status status

Chronic Heart Failure 2017 Australian PEEK Study 56 Section 2

SF36 Health change 100 80 60 40 20 0

No hyperkalaemia Hyperkalaemia

Figure 2.63: Boxplot of SF36 health change by hyperkalaemia status

Chronic Heart Failure 2017 Australian PEEK Study 57 Section 2

Table 2.15: Summary statistics and Two sample t-test of SF36 subscales by hyperkalaemia status SF36 subscale Group Count Mean SD T df p Energy/fatigue No hyperkalaemia 45 42.67 12.82 0.96 48 0.3414 Hyperkalaemia 5 37.00 8.37 Emotional No hyperkalaemia 68.36 18.76 0.13 48 0.8977 well-being Hyperkalaemia 67.20 21.05 General Health No hyperkalaemia 37.22 21.60 0.89 48 0.3765 Hyperkalaemia 28.00 25.15 Health change No hyperkalaemia 49.44 28.94 0.70 48 0.4848 Hyperkalaemia 40.00 22.36

Table 2.16 :Summary statistics Wilcoxon rank sum test with continuity correction of SF36 subscales by hyperkalaemia status SF36 subscale Group Count Median IQR W p Physical functioning No 50.00 55.0 143.50 0.3228 hyperkalaemia Hyperkalaemia 25.00 40.00

Role limitations due to No 0.00 75.00 85.50 0.3476 physical health hyperkalaemia Hyperkalaemia 25.00 0.00 Role limitations due to No 100.00 100.00 97.00 0.5929 emotional problems hyperkalaemia Hyperkalaemia 100.00 66.67 Social functioning No 62.50 25.00 116.50 0.9087 hyperkalaemia Hyperkalaemia 62.50 12.50 Pain No Anxiety 65.00 45.00 169.50 0.0657 Anxiety 32.50 22.50

Chronic Heart Failure 2017 Australian PEEK Study 58 Section 3 Section 3 Symptoms and diagnosis

Chronic Heart Failure 2017 Australian PEEK Study Section 3

Section 3: Experience of symptoms and diagnosis Summary Symptoms at diagnosis • Participants were asked which symptoms they noticed before diagnosis. The most common symptom experienced by all participants was feeling tired (fatigue) (n=44; 88.00%) followed by being breathless (n=41; 82.00%), weakness (n=37; 74.00%) and weight gain (n=30; 60.00%). Other symptoms noted by more than half of all participants were swollen ankles (n=28; 56.00%) and dizziness (n=28; 56.00%). • There was one variation between subgroups in relation to symptoms experienced. Participants with class I/II heart failure noted loss of appetite less frequently than participants with class III/IV disease (20.00% compared to 37.14% in participants with class III/IV disease). • All symptoms experienced by participant had a mean score of between 2.07 and 2.97, that is, they were all scored in the ‘life was distressing to ‘life was a little distressing’ range. • The majority of participants described having a significant cardiac event that led them to their diagnosis. This was noted by 29 participants (58.00%). • In relation to specific symptoms leading to diagnosis, shortness of breath was the most commonly noted symptom (n=19; 38.00%) followed by chest pain or palpitations (n=18; 36.00%). There were 14 participants (28.00%) that described just not feeling right and/or having flu-like symptoms. • There was one variation between subgroups in relation to symptoms leading to diagnosis. Participants with hypertension noted feeling ‘not quite right’ more frequently than participants the general cohort (41.67% compared to 28.00% in the general cohort). • Within participant’s description of symptoms and diagnosis, it was possible to code data to determine their diagnostic pathway. The most common pathway described was through a hospital emergency admission (n=24; 48.00%) followed by a General Practitioner referral to a cardiologist (n=12; 24.00%). There were also 12 participants (24.00%) that described that their initial investigation did not lead to a diagnosis, with symptoms persisting and the diagnosis coming later. • Participants were asked in the questionnaire to provide the date (as close as possible) of when they started to notice symptoms and the date (as close as possible) of when they were diagnosed. Days to diagnosis for participants with class I/II disease was 81.89 days compared with 136.72 for class III/IV participants. Days to diagnosis for metropolitan participants was 83.73 days compared to 161.83 days for regional/rural participants. • There were various combinations of diagnostic tests conducted with the most common tests recalled being electrocardiogram (n=39; 78.00%) and echocardiogram (n=35; 70%). Other tests included coronary angiogram (n=30; 60.00%) and chest x-ray (n=24; 48.00%). • In the questionnaire, participants were asked whether they felt supported at the time of diagnosis. There were 27 participants (54.00%) that noted they had no support and this was the most common response followed by having enough support (n=16; 32.00%). Genetic/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. The majority of participants (n=43; 86.00%) had not had a discussion while seven (14.00%) stated they had had a discussion about this kind of test, of which four participants actually had the test. Knowledge of condition and prognosis • Participants were asked how much they knew about their condition at diagnosis. The majority of participants (n=45; 90.00%) knew nothing or very little about their condition. There was one participant (2.00%) that stated they knew about the condition, however most of their knowledge came from subsequent research that they did post-diagnosis. • There were 10 participants (20.00%) that had a lack of clarity in relation to prognosis however the majority of participants (n=30; 60.00%) were able to provide a description of prognosis with many also describing treatment options for the future.

60 Chronic Heart Failure 2017 Australian PEEK Study Section 3

Experience of symptoms before diagnosis experienced by all participants was feeling tired (fatigue) (n=44; 88.00%) followed by being breathless Participants were asked to recall the symptoms that (n=41; 82.00%), weakness (n=37; 74.00%) and weight they noticed in themselves that led them to pursue gain (n=30; 60.00%). Other symptoms noted by more further investigation with a clinician. This question than half of all participants were swollen ankles was asked both in an online questionnaire and as part (n=28; 56.00%) and dizziness (n=28; 56.00%). of the structured interview. Responses from both sources of information were cross-validated to There was one variation between subgroups in compile these results. relation to symptoms experienced. Participants with class I/II heart failure noted loss of appetite less Symptoms at diagnosis frequently than participants with class III/IV disease Participants were asked which symptoms they noticed (20.00% compared to 37.14% in participants with before diagnosis. The most common symptom class III/IV disease).

Table 3.1: Symptoms experienced before diagnosis

Symptoms at diagnosis Class I/Class II Class III/Class IV All participants n=50 n=15 n=35 n= % n= % n= % Tired 13 86.67 31 88.57 44 88.00 Breathless 12 80.00 29 82.86 41 82.00

Weakness 10 66.67 27 77.14 37 74.00 Weight gain 9 60.00 21 60.00 30 60.00 Swollen ankles 8 53.33 20 57.14 28 56.00

Dizzy 8 53.33 20 57.14 28 56.00

Loss of appetite 3 20.00 13 37.14 16 32.00

Persistent cough or wheeze 5 33.33 10 28.57 15 30.00

Symptoms at diagnosis Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Tired 31 91.18 20 83.33 20 83.33 21 87.50 5 100.00 44 88.00 Breathless 30 88.24 19 79.17 20 83.33 21 87.50 4 80.00 41 82.00 Weakness 27 79.41 16 66.67 18 75.00 15 62.50 4 80.00 37 74.00 Weight gain 21 61.76 12 50.00 13 54.17 14 58.33 4 80.00 30 60.00 Swollen ankles 21 61.76 13 54.17 13 54.17 15 62.50 4 80.00 28 56.00

Dizzy 19 55.88 13 54.17 13 54.17 13 54.17 3 60.00 28 56.00 Loss of appetite 14 41.18 7 29.17 7 29.17 8 33.33 2 40.00 16 32.00 Persistent cough or wheeze 9 26.47 7 29.17 9 37.50 6 25.00 2 40.00 15 30.00

61 Chronic Heart Failure 2017 Australian PEEK Study Section 3

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Figure 3.1: Symptoms experienced before diagnosis (% of all participants) Table 3.2: Symptoms experienced and quality of life scores

Symptoms at n= Range Mean QoLLife was very Life was Life was a little Life was average Life was good Life was very Life was great diagnosis score distressing distressing distressing (Score = 4) (Score = 5) good (Score = 7) (Score = 1) (Score = 2) (Score = 3) (Score = 6)

n= % n= % n= % n= % n= % n= % n= % Weakness 37 1 (min) – 2.97 7 18.92 7 18.92 7 18.92 14 37.84 1 2.70 0 0.00 1 2.70 7 (max) Weight gain 30 1 (min) – 2.90 7 23.33 7 23.33 2 6.67 11 36.67 2 6.67 1 3.33 0 0.00 6 (max) Tired 44 1 (min) – 2.70 9 20.45 15 34.09 5 11.36 11 25.00 3 6.82 1 2.27 0 0.00 6 (max) Dizzy 28 1 (min) – 2.68 7 25.00 7 25.00 5 17.86 7 25.00 1 3.57 1 3.57 0 0.00 6 (max) Breathless 40 1 (min) – 2.54 10 24.39 13 31.71 7 17.07 8 19.51 3 47.32 0 0.00 0 0.00 5 (max) Swollen ankles 28 1 (min) – 2.46 9 32.14 7 25.00 4 14.29 0 0.00 7 25.00 1 3.57 0 0.00 6 (max) Loss of appetite 16 1 (min) – 2.13 4 25.00 7 43.75 4 25.00 1 6.25 0 0.00 0 0.00 0 0.00 4 (max) Persistent cough 15 1 (min) – 2.07 6 40.00 3 20.00 5 33.33 1 6.67 0 0.00 0 0.00 0 0.00 or wheeze 4 (max)

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Figure 3.2: Symptoms experienced and average quality of life scores For each symptom experienced, participants were scored the most impact on quality of life were asked what their quality of life was like while they persistent cough or wheeze (average score 2.07), loss experienced those symptoms. In this scale, 1 is ‘Life of appetite (average score 2.13), swollen ankles was very distressing’ 4 is ‘Life is average’ and 7 is ‘Life (average score 2.46) and being breathless (average was great’. All symptoms experienced by participant score 2.54). The symptoms that scored the least had a mean score of between 2.07 and 2.97, that is, impact on quality of life were weakness (average they were all scored in the ‘life was distressing to ‘life score 2.97), followed by weight gain (average score was a little distressing’ range. The symptoms that 2.90), and feeling tired (average score 2.70). Chronic Heart Failure 2017 Australian PEEK Study 62 Section 3 Description of diagnosis palpitations (n=18; 36.00%). There were 14 participants (28.00%) that described just not feeling In the structured interview, participants were asked right and/or having flu-like symptoms. to describe what led them to being diagnosed. The majority of participants described having a significant There was one variation between subgroups in cardiac event that led them to their diagnosis. This relation to symptoms leading to diagnosis. was noted by 29 participants (58.00%). Participants with hypertension noted feeling ‘not quite right’ more frequently than participants the In relation to specific symptoms leading to diagnosis, general cohort (41.67% compared to 28.00% in the shortness of breath was the most commonly noted general cohort). symptom (n=19; 38.00%) followed by chest pain or

Table 3.3: Symptoms experienced at diagnosis Symptoms leading to diagnosis Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= %

Participant describes having a medical 7 46.67 22 62.86 14 66.67 15 51.72 29 58.00 emergency at diagnosis Participant describes having shortness 4 26.67 15 42.86 5 23.81 14 48.28 19 38.00 of breath (causing fatigue) Participant describes chest pain/tight 8 53.33 10 28.57 8 38.10 10 34.48 18 36.00 chest/Palpitations Participant describes not feeling quite 4 26.67 10 28.57 9 42.86 5 17.24 14 28.00 right/flu-like symptoms (including dizziness) Participant describes having severe 4 26.67 4 11.43 4 19.05 4 13.79 8 16.00 fatigue Participant describes having symptoms 2 13.33 6 17.14 1 4.76 7 24.14 8 16.00 over a number of years Participant describes ignoring 2 13.33 3 8.57 2 9.52 3 10.34 5 10.00 symptoms initially

Symptoms leading to diagnosis Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes having a medical 17 50.00 13 54.17 12 50.00 14 58.33 3 60.00 29 58.00 emergency at diagnosis Participant describes having shortness 13 38.24 10 41.67 10 41.67 10 41.67 3 60.00 19 38.00 of breath (causing fatigue) Participant describes chest pain/tight 12 35.29 10 41.67 6 25.00 8 33.33 1 20.00 18 36.00 chest/Palpitations Participant describes not feeling quite 11 32.35 8 33.33 7 29.17 10 41.67 1 20.00 14 28.00 right/flu-like symptoms (including dizziness) Participant describes having severe 4 11.76 4 16.67 5 20.83 3 12.50 0 0.00 8 16.00 fatigue Participant describes having symptoms 5 14.71 5 20.83 5 20.83 6 25.00 1 20.00 8 16.00 over a number of years Participant describes ignoring symptoms 3 8.82 2 8.33 2 8.33 3 12.50 0 0.00 5 10.00 initially

Chronic Heart Failure 2017 Australian PEEK Study 63 Section 3

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0 Participant describes Participant describes Participant describes Participant describes not Participant describes Participant describes Participant describes having a medical having shortness of chest pain/tight feeling quite right/flu-like having severe fatigue having symptoms over a ignoring symptoms emergency at diagnosis breath (causing fatigue) chest/Palpitations symptoms (including number of years initially dizziness)

Figure 3.3: Symptoms experienced at diagnosis Within participant’s description of symptoms and described that their initial investigation did not lead to diagnosis, it was possible to code data to determine a diagnosis, with symptoms persisting and the their diagnostic pathway. The most common pathway diagnosis coming later. There was a variation to this described was through a hospital emergency theme in relation to regional/rural participants (n=3; admission (n=24; 48.00%) followed by a General 14.29%) compared to metropolitan participants (n=9; Practitioner referral to a cardiologist (n=12; 24.00%). 31.03%). There were also 12 participants (24.00%) that

Table 3.4: Diagnostic pathway

Diagnostic pathway Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29

n= % n= % n= % n= % n= %

Diagnosis pathway described as 6 40.00 18 51.43 12 57.14 12 41.38 24 48.00 emergency admission Diagnosis pathway described as GP- 4 26.67 8 22.86 3 14.29 9 31.03 12 24.00 Cardiologist Participant describes initial 6 40.00 6 17.14 3 14.29 9 31.03 12 24.00 investigations not leading to a diagnosis Diagnosis pathway described as GP- 1 6.67 5 14.29 4 19.05 2 6.90 6 12.00 Emergency/Hospital admission Diagnosis pathway described as being 3 20.00 2 5.71 0 0.00 5 17.24 5 10.00 first identified through specialist (not cardiology) while having an unrelated investigation Diagnosis pathway described as 1 6.67 2 5.71 2 9.52 1 3.45 3 6.00 GP/Cardiologist/Hospital admission

Diagnostic pathway Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Diagnosis pathway described as 13 38.24 8 33.33 9 37.50 11 45.83 3 60.00 24 48.00 emergency admission Diagnosis pathway described as GP- 11 32.35 6 25.00 7 29.17 7 29.17 2 40.00 12 24.00 Cardiologist Participant describes initial 4 11.76 7 29.17 7 29.17 5 20.83 0 0.00 12 24.00 investigations not leading to a diagnosis Diagnosis pathway described as GP- 5 14.71 4 16.67 2 8.33 3 12.50 0 0.00 6 12.00 Emergency/Hospital admission Diagnosis pathway described as being 3 8.82 4 16.67 3 12.50 2 8.33 0 0.00 5 10.00 first identified through specialist (not cardiology) while having an unrelated investigation Diagnosis pathway described as 2 5.88 2 8.33 3 12.50 1 4.17 0 0.00 3 6.00 GP/Cardiologist/Hospital admission

Chronic Heart Failure 2017 Australian PEEK Study 64 Section 3

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Figure 3.4: Diagnostic pathway Participants were asked in the questionnaire to participants. Days to diagnosis for metropolitan provide the date (as close as possible) of when they participants was 83.73 days compared to 161.83 days started to notice symptoms and the date (as close as for regional/rural participants. Six outliers were possible) of when they were diagnosed. Days to removed from this calculation (days from symptoms diagnosis for participants with class I/II disease was to diagnosis was greater than 1000 days). 81.89 days compared with 136.72 for class III/IV

Table 3.5: Days to diagnosis

Days to diagnosis Average days

Class I/Class II 81.89

ClassIII/Class IV 136.72

All participants excluding outliers 118.44

Days to diagnosis Average days

Metropolitan 83.73

Regional 161.83

All participants excluding outliers 118.44

Diagnostic tests There were various combinations of diagnostic tests conducted with the most common tests recalled being electrocardiogram (n=39; 78.00%) and echocardiogram (n=35; 70%). Other tests included coronary angiogram (n=30; 60.00%) and chest x-ray (n=24; 48.00%).

Chronic Heart Failure 2017 Australian PEEK Study 65 Section 3 Table 3.6: Diagnostic tests

Diagnostic tests Class I/Class II Class III/Class IV Metropolitan Regional/Rural All participants n=50 n=15 n=35 n= n= n= % n= % n= % n= % n= % Electrocardiogram (ECG) 11 73.33 28 80.00 21 72.41 18 85.71 39 78 Echocardiogram 14 93.33 22 62.86 20 68.97 16 76.19 35 70 Coronary angiogram 6 40.00 24 68.57 17 58.62 13 61.90 30 60 Chest X-ray 7 46.67 17 48.57 10 34.48 14 66.67 24 48

Symptoms at diagnosis Arrhythmias Hypertension All participants n=50 (n=24) (n=24)

n= % n= % n= % Electrocardiogram (ECG) 19 79.17 21 87.50 39 78 Echocardiogram 19 79.17 14 58.33 35 70 Coronary angiogram 13 54.17 20 83.33 30 60 Chest X-ray 15 62.50 11 45.83 24 48

Support at diagnosis support and this was the most common response followed by having enough support (n=16; 32.00%). In the questionnaire, participants were asked whether The least frequent response was having some they felt supported at the time of diagnosis. There support, but not enough (n=7; 14.00%). were 27 participants (54.00%) that noted they had no

Table 3.7: Support at diagnosis

Diagnostic tests Class I/Class II Class III/Class IV Metropolitan Regional/Rural All participants n=50 n=15 n=35 n= n= n= % n= % n= % n= % n= % 8 53.33 19 54.29 16 55.17 11 52.38 27 54.00 I/we had no support 7 46.67 9 25.71 10 34.48 6 28.57 16 32.00 I/we had enough support I/we had some support but it 0 0.00 7 20.00 3 10.34 4 19.05 7 14.00 wasn't enough

Genetic and biomarker tests (n=43; 86.00%) had not had a discussion while seven (14.00%) stated they had had a discussion about this Participants were asked whether they had ever had a kind of test, of which four participants actually had discussion about genetic tests or tests to see if there the test. were biomarkers that might be relevant to their condition or treatment. The majority of participants

Chronic Heart Failure 2017 Australian PEEK Study 66 Section 3

Table 3.8: Genetic and biomarker tests

Biomarker/genetic testing Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes not having any 15 100.00 28 80.00 19 90.48 24 82.76 43 86.00 discussion about genetic or biomarker testing Participant describes having a 1 6.67 6 17.14 2 9.52 5 17.24 7 14.00 discussion about genetic or biomarker testing*

Biomarker/genetic testing Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes not having any 27 79.41 21 87.50 18 75.00 22 91.67 5 100.00 43 86.00 discussion about genetic or biomarker testing Participant describes having a 6 17.65 4 16.67 6 25.00 1 4.17 0 0.00 7 14.00 discussion about genetic or biomarker testing*

Where participants stated that this kind of test was “No, nobody has and I've been reading about it for something they were interested in, they often spoke the last two to three years and I do have a about wanting to know if their heart failure was cardiologist appointment in January I think or caused by a hereditary component: February and I was going to bring it up with her. Because I am a little bit concerned that it might be in “It concerns me more that then within the last two the genes.” [Participant 38] years, my son's been told he's got a minor form of heart failure as well. That makes me think more now Understanding of condition at Diagnosis that maybe there is something genetic there, but it's Participants were asked how much they knew about not been completely checked to see whether there is their condition at diagnosis. The majority of or isn't.” [Participant 16] participants (n=45; 90.00%) knew nothing or very little “No. No, but I do know my father if he had the same about their condition. There was one participant thing I've got. That would be what I want to know.” (2.00%) that stated they knew about the condition, [Participant 21] however most of their knowledge came from subsequent research that they did post-diagnosis. Table 3.9: Understanding of condition at diagnosis

Knowledge of disease at diagnosis Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes knowing nothing 15 100.00 30 85.71 20 95.24 25 86.21 45 90.00 or very little about their condition at diagnosis Participant describes knowing some 0 0.00 1 2.86 0 0.00 1 3.45 1 2.00 details about their condition at diagnosis but mostly needing to search for information Other 0 0.00 1 2.86 1 4.76 0 0.00 4 8.00

Chronic Heart Failure 2017 Australian PEEK Study 67 Section 3

100 90 80 70 60 50 40 30 20 10 0 Participant describes knowing nothing or Participant describes knowing some details very little about their condition at about their condition at diagnosis but diagnosis mostly needing to search for information

Figure 3.5: Understanding of condition at diagnosis (% of all participants)

“Absolutely nothing. I had no clue what was going “I knew nothing about the condition. Nothing at all. on. When I got the letter from the clinic and it said Then I Googled it and had myself on death's door. on it, "Advanced Heart Failure and Transplant Unit," That was the worst thing I did was Google it, I nearly died, you know, I just freaked out. I didn't because that just got me into a state of panic. The know what the hell was going on then. Really scary” doctors warned me. They were great. He said to me, [Participant 7] "Do not Google it." Of course when somebody tells you not to do something like that, the first thing you “Not a lot, and to tell you the truth, I probably don't do, is do it.” [Participant 33] know a lot about it now. My doctor, he's not very good with patients.” [Participant 13]

Communication and understanding of prognosis me to new medications, new treatments. So when I Participants were asked whether anyone talked to was first diagnosed they gave me about five years. them about prognosis. There were 10 participants I've already passed that. And now they keep just sort (20.00%) that had a lack of clarity in relation to of putting an extra five years, another five years, you prognosis however the majority of participants (n=30; know? Which is nice.” [Participant 7] 60.00%) were able to provide a description of “I'll have it my whole life. I'm currently atrial prognosis with many also describing treatment fibrillation as well. I've been for three years, and my options for the future: heart's ... The right atrial part of my heart is too “Okay, at the moment I've got no cure. I'm not a enlarged. I've had three failed DCR's. The likelihood transplant candidate, because I've got too many of me even being out of AF is very unlikely. But I'm other things going on. So ... Oh, I'm really not sure wanting to continue to fight that, because I really what the prognosis will be, but they have changed don't like being in AF.” [Participant 28] Table 3.11: Understanding of prognosis

Understanding of prognosis Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant is able to provide a 10 66.67 20 57.14 10 47.62 20 68.97 30 60.00 description of prognosis that describes current condition and/or future treatment options Participant describes lack of clarity in 2 13.33 8 22.86 6 28.57 4 13.79 10 20.00 relation to prognosis Participant describes treatment 2 13.33 2 5.71 2 9.52 2 6.90 4 8.00 aspects, but not a clear description of prognosis. Participant describes not being spoken 1 6.67 3 8.57 2 9.52 2 6.90 4 8.00 to about prognosis 0 0.00 2 5.71 1 4.76 1 3.45 2 4.00 Other

Chronic Heart Failure 2017 Australian PEEK Study 68 Section 4 Section 4 Decision-making

Chronic Heart Failure 2017 Australian PEEK Study Section 4

Section 4: Experience of health professional communication

Summary

Conversations about treatments • Participants were asked to describe the conversation that they had with the clinician about treatment at diagnosis. The most common theme was related to participants describing discussions being focused on disease progression and treatment options (n=19; 38.00%). There were nine participants (18.00%) that described being told what to do without discussion as such, and this was the second most common theme.

Clinical trials • Participants were asked whether they had had a discussion about clinical trials. The majority of participants (n=37; 74.00%) noted that they had not discussed clinical trials. There were 10 participants that (20.00%) noted their doctor had discussed clinical trials with them, and nine of these participants (18.00%) went on to participating in a clinical trial. These participants were asked whether they felt supported and their experience throughout the trial. • Participants from regional/rural areas reported not being spoken to about clinical trials more frequently than participants in metropolitan areas (85.71% compared to 65.52% in metropolitan areas). They also reported that their doctor brought up the topic of clinical trials less frequently than participants in metropolitan areas (9.52% compared to 27.59% in metropolitan areas). • As a follow-up question, participants were asked whether they would be interested in clinical trials in the future. Most participants (n=35; 70.00%) stated that they would be interested in a clinical trial, with six participants (12.00%) that were not interested. • Participants in regional/rural areas reported that they had not participated in a clinical trial and did not want to more frequently than participants in metropolitan areas (23.81% compared to 3.45% for metropolitan participants). They also reported participating in clinical trials less frequently than participants in metropolitan areas (4.76% compared to 27.59% for metropolitan participants).

Decision-making • Participants were asked who was involved in decisions made about treatment and care. The most common theme (n=29; 58.00%) was that decision-making was primarily between themselves, family (in some cases close friends) and their treating clinician. The remaining themes were variations of this combination with 14 participants (28.00%) describing decision-making between themselves and their treating clinician and 5 participants (10.00%) describing decision-making between themselves and their family. Participants also spoke about not including some family members as they didn’t feel it was necessary at this time or they did not want to worry them • Participants were asked about the things that they take into consideration when making decisions about treatment. The most common theme identified was taking into account the impact on everyday living and ability to live as normal a life as possible (n=17; 34.00%). This related to overall quality of life. • Participants in regional/rural areas reported taking into account success rate balanced with outcome less frequently than participants in metropolitan areas (4.76% compared to 27.59% for metropolitan participants). They also taking into account the impact on their family more frequently than participants in metropolitan areas (23.81% compared to 13.79% for metropolitan participants). Participants with class I/class II disease reported taking into account the impact on everyday living less frequently than participants with class III/class IV disease (26.67% compared to 37.14% for class III/class IV disease). Participants with class I/class II disease described taking into account success rate balanced with outcome more frequently than participants with class III/class IV disease (26.67% compared to 14.29% for class 3/class 4 disease) and there were no participants with class I/class II disease that described primarily taking into account the advice of their clinician (25.71% for class III/class IV participants). Participants with arrhythmias described primarily taking into account the advice of their clinician less frequently than the general cohort (8.33% compared to 18.00% for the general cohort).

70 Chronic Heart Failure 2017 Australian PEEK Study Section 4 • Participants were asked whether they felt the way they made decisions had changed over time since they were diagnosed. The most common theme was that participants primarily made decisions in the same way. For those who had changed the way they make decisions, there were 15 participants (30.00%) that noted that this was in relation to being more assertive and informed. • Participants from regional/rural areas reported making decisions in the same way more frequently than participants from metropolitan areas (47.62% compared to 34.48% for participants in metropolitan areas). They also described being assertive and more informed less frequently than metropolitan participants (9.52% compared to 44.83% for participants in metropolitan areas). Participants with hypertension reported making decisions in the same way more frequently than the general cohort (50.00% compared to 40.00% in the general cohort).

71 Chronic Heart Failure 2017 Australian PEEK Study Section 4 Discussions about treatment “The discussions were really good, because the doctors and nurses worked as a team, and they came Participants were asked to describe the conversation to me as a team, and we discussed things together, that they had with the clinician about treatment at and they told me what they think should happen, diagnosis. The most common theme was related to and they tried to reassure me, and it was all really participants describing discussions being focused on very good.” [Participant 24] disease progression and treatment options (n=19; 38.00%): There were nine participants (18.00%) that described being told what to do without discussion as such, and “Yes, quite clear that there were a few options to this was the second most common theme: try. So the first one was medication, the second then were comparent with defibrillator changes, because I “Not probably a lot of conversations, because it was already had a defibrillator, so they had to alter the more like, "You have to go on this medication settings because the were no longer helping the because it's going to save your life." Yeah. That was conditions that were exacerbating the heart failure, basically it. If I don't take it, well, they can't the settings I had it on. And the third was transplant, guarantee how long ... they basically said by me if it continued on the path it was on. For so much of taking this medication we'll get ... I'll live a the deterioration I was experiencing in the short reasonable life.” [Participant 8] term, we had the transplant.” [Participant 10] “It was mainly medication. They didn't give you very “He mostly talked about the medical, as in many options. They basically said, this is what you're medicines. Drugs, whatever. We mostly talked about going to have to take this medication, this that and we talked about different tests to rule out medication and this medication. I'm on about two or different things, which is what the right, left cath three of them. And basically I'll be on them for life. came into, and the possibility of putting extra wires They didn't give you a choice.” [Participant 38] in my ICD to turn the pacer on. And what it could “Not very much really. He just said, "You need the lead to, the different outcomes, like for a-fib and all heart specialist. You need an angiogram. You need that sort of stuff. We've always talked about these blood tests. You probably need stents. You will transplants since I was young. He's always take this medication.” [Participant 50] conditioned into me so it wouldn't be a "oh my god, that's what going to happen." It's always been a possibility. Yeah.” [Participant 18]

Table 4.1: Discussions about treatment

Conversations about treatment Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes discussions that 5 33.33 14 40.00 9 42.86 10 34.48 19 38.00 described disease progression and treatment options Participant describes no/little discussions 3 20.00 6 17.14 3 14.29 6 20.69 9 18.00 being held, only being told what to do Participant describes the feeling of having 3 20.00 3 8.57 4 19.05 2 6.90 6 12.00 little or no treatment options discussed Participant describes discussions focussed 2 13.33 4 11.43 3 14.29 3 10.34 6 12.00 on stabalising their condition Participant is unable to recall in detail the 1 6.67 1 2.86 1 4.76 1 3.45 2 4.00 conversations that were had

Conversations about treatment Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes discussions that 16 47.06 8 33.33 11 45.83 8 33.33 2 40.00 19 38.00 described disease progression and treatment options Participant describes no/little discussions 5 14.71 5 20.83 4 16.67 6 25.00 1 20.00 9 18.00 being held, only being told what to do. Participant describes the feeling of having 3 8.82 3 12.50 3 12.50 3 12.50 1 20.00 6 12.00 little or no treatment options discussed Participant describes discussions focussed 4 11.76 2 8.33 3 12.50 2 8.33 1 20.00 6 12.00 on stabalising their condition Participant is unable to recall in detail the 1 2.94 2 8.33 0 0.00 2 8.33 0 0.00 2 4.00 conversations that were had

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Discussions about clinical trials haven't been told much at all really. All the information I know I found out on the Google. Yeah.” Participants were asked whether they had had a [Participant 8] discussion about clinical trials. The majority of participants (n=37; 74.00%) noted that they had not “That was quite good. I sort of noticed a few discussed clinical trials. There were 10 participants changes, by keeping your body temperature at a that (20.00%) noted their doctor had discussed clinical certain level. Yeah. I haven't seen the results of that trials with them, and nine of these participants study yet. I believe it's another 12 months before we (18.00%) went on to participating in a clinical trial. get to see it. Yeah, I'd have phone calls every couple These participants were asked whether they felt of weeks and clinic visits and, to discuss it, yeah. That supported and their experience throughout the trial. was very good.” [Participant 17] There were no common themes identified in relation to clinical trial experience with participants describing “The whole experience, the whole team there was situations varying from being well supported, to not someone with my husband the entire time. They knowing exactly what the study was about: were there from the beginning to the end for me as well. I would say the whole experience was “I'd just go over to the hospital and ... I don't know. incredible. I would do anything for Dr. NAME to help. What happened? They gave me an iron infusion. Now it's approved.” [Participant 25] They did tell me that it could be a placebo and so I

Table 4.2: Discussions about clinical trials

Conversations about clinical trials Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % No one has ever spoken to me 11 73.33 26 74.29 18 85.71 19 65.52 37 74.00 about clinical trials My doctor brought up the topic of 2 13.33 8 22.86 2 9.52 8 27.59 10 20.00 clinical trials for discussion I brought up the topic of clinical 0 0.00 0 0.00 0 0.00 0 0.00 3 6.00 Conversations about clinical trials Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants trials with my doctor for discussion (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % No one has ever spoken to me about 24 70.59 17 70.83 17 70.83 18 75.00 4 80.00 37 74.00 clinical trials My doctor brought up the topic of 9 26.47 6 25.00 6 25.00 5 20.83 1 20.00 10 20.00 clinical trials for discussion I brought up the topic of clinical 0 0.00 0 0.00 0 0.00 0 0.00 0 0.00 3 6.00 trials with my doctor for discussion

Chronic Heart Failure 2017 Australian PEEK Study 73 Section 4

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Participants from regional/rural areas reported not metropolitan areas (9.52% compared to 27.59% in being spoken to about clinical trials more frequently metropolitan areas). than participants in metropolitan areas (85.71% As a follow-up question, participants were asked compared to 65.52% in metropolitan areas). They also whether they would be interested in clinical trials in reported that their doctor brought up the topic of the future. Most participants (n=35; 70.00%) stated clinical trials less frequently than participants in that they would be interested in a clinical trial, with six participants (12.00%) that were not interested.

Table 4.3: Participant in clinical trials Participation in clinical trials Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % I have not participated in a clinical 9 60.00 26 74.29 15 71.43 20 68.97 35 70.00 trial but would like to if there is one for me I have not participated in a clinical 4 26.67 2 5.71 5 23.81 1 3.45 6 12.00 trial and do not want to 2 13.33 7 20.00 1 4.76 8 27.59 9 18.00 I have participated in a clinical trial

Participation in clinical trials Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % I have not participated in a clinical 24 70.59 16 66.67 16 66.67 18 75.00 4 80.00 35 70.00 trial but would like to if there is one for me I have not participated in a clinical 2 5.88 2 8.33 2 8.33 1 4.17 0 0.00 6 12.00 trial and do not want to I have participated in a clinical trial 8 23.53 6 25.00 6 25.00 5 20.83 1 20.00 9 18.00

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Participants in regional/rural areas reported that they had not participated in a clinical trial and did not want to more frequently than participants in metropolitan areas (23.81% compared to 3.45% for metropolitan participants). They also reported participating in clinical trials less frequently than participants in metropolitan areas (4.76% compared to 27.59% for metropolitan participants).

Decision-making “My wife. Naturally, they've taken my licence off me, so everywhere I go, my wife's got to drive me. She's Who is involved in decision-making learned so much about it as well by Dr. Googling sort of thing. She wants to know what's going on herself. Participants were asked who was involved in decisions It's always my wife and I. I don't take it through my made about treatment and care. The most common children. I don't want them ... even when I first went theme (n=29; 58.00%) was that decision-making was in the hospital and got cut up, I was a mess. I had primarily between themselves, family (in some cases tubes hanging off me everywhere. I told her, I said, "I close friends) and their treating clinician. The don't want my children in." Talking to my wife. "I remaining themes were variations of this combination don't want my children in. I can't let them see me with 14 participants (28.00%) describing decision- this way." It's just me and my wife and the doctor.” making between themselves and their treating [Participant 14] clinician and 5 participants (10.00%) describing decision-making between themselves and their “Look, I talk with my wife, and we talk with the family. Participants also spoke about not including clinician, and together we make the decisions. Yeah. some family members as they didn’t feel it was The rest of the family, I mean, they don't fully necessary at this time or they did not want to worry understand what's going on. They just know I've got them: a heart problem, and that's about as far as it goes with them. I mean, they're concerned for me but it's “I usually just talk to my clinicians because my family all just too involved, and they're leading their own don't handle it very well. If that makes sense?” lives, sort of thing.” [Participant 26] [Participant 6]

Table 4.4: Decision-making process – who patients consult

Who is involved in making decisions Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes decision-making 10 66.67 19 54.29 12 57.14 17 58.62 29 58.00 primarily between themselves, family (close friends) and treating physician Participant describes decision-making 4 26.67 10 28.57 6 28.57 8 27.59 14 28.00 primarily between themselves and treating physician Participant describes decision-making 0 0.00 5 14.29 2 9.52 3 10.34 5 10.00 primarily between themselves and family (close friends) Other 0 0.00 2 5.71 2 9.52 0 0.00 2 4.00

Chronic Heart Failure 2017 Australian PEEK Study 75 Section 4

Who is involved in making decisions Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes decision-making 16 47.06 14 58.33 16 66.67 13 54.17 2 40.00 29 58.00 primarily between themselves, family (close friends) and treating physician Participant describes decision-making 11 32.35 6 25.00 6 25.00 8 33.33 2 40.00 14 28.00 primarily between themselves and treating physician Participant describes decision-making 5 14.71 2 8.33 1 4.17 2 8.33 1 20.00 5 10.00 primarily between themselves and family (close friends) Other 0 0.00 0 0.00 0 0.00 1 4.17 1 20.00 2 4.00

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What is considered when making decisions because I've got quite an extensive medical history.” [Participant 32] Participants were asked about the things that they take into consideration when making decisions about “Well generally speaking, how I'm going to feel treatment. The most common theme identified was afterwards, and whether it is to the benefit of me, taking into account the impact on everyday living and because there's only me to look after. My quality of ability to live as normal a life as possible (n=17; life, is my quality of life going to be improved?” 34.00%). This related to overall quality of life: [Participant 29] “Quality of life. Quality of life is the biggest one for The next most common themes were likely success me. For a lot of stages, I still have major depression. rate (n=9; 18.00%) and advice from their clinician In the early stages, major depression as in wanting (n=9; 18.00%) and impact on family (n=9; 18.00%). to kill myself. I had no quality of life. I had an oxygen Participants that spoke about impact on family machine at home and I was on oxygen for 24 hours a particularly noted the impact on their day, 7 days a week. I had two. I had a big one and I partners/spouse, including financial pressures: had a portable one. You go to shops and take it with you, so forth and so forth. It always became quality “I tend to look how it's gonna impact both of us, of life number one.” [Participant 13] because I feel my wife ... well, she gave up a lot to get us to get to 10 years down the track where I only “In general? I will generally think about how it would have to see the doctor every 12 months. I'm allowed impact on my quality of life. My ability to be active to do an amount of work, so I feel like I'm and look after myself and my family, particularly my contributing again. She gave up a good paying job little boy, impact on my ability to work. And just and had to nurse for me so long, so it's kind of like I some of the side effects, the possible side effects and weigh up the option as to whether it's gonna impact how it all plays with my past medical history, her, or how it's gonna impact the house and all that, Chronic Heart Failure 2017 Australian PEEK Study 76 Section 4 and what we're doing. And then everything else kind question was. Oh, impact...Yeah. Usually that's it. of gets put further down the line because they're the Usually it's that. It's whether it's going to affect how most important things to me.” [Participant 24] much time NAME/HUSBAND has to have off work, because he's always with “Yes. We do take into consideration the effect on my ability to live a little normally or how it's going to me. Whether I can be at home on my own after a affect our home life, because it's the two of us. Then treatment, because that tends to be a little hard. also how it's going to affect us financially because Yeah. That's mostly what we consider.” [Participant my cardiologist ... in trying to encourage us to move 35] to CITY to be closer to him ...Yes. Because in REGIONAL LOCATION, I usually just use it as an “Sort of like is it going to affect my family and work emergency gateway to get the flight that I need and all those kind of things obviously come into play when there's an emergency, although they do have a as well.” [Participant 41] lovely city view. Now I've forgotten what your

Table 4.5: Considerations when making decisions

Factors in decision-making Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes taking into account 4 26.67 13 37.14 7 33.33 10 34.48 17 34.00 the impact on everyday living and ability to live a normal life (Quality of LIfe) Participant describes taking into account 4 26.67 5 14.29 1 4.76 8 27.59 9 18.00 the likely success rate and risks balanced with outcome Participant describes primarily taking into 0 0.00 9 25.71 4 19.05 5 17.24 9 18.00 account the advice of their clinician Participant describes taking into account 2 13.33 7 20.00 5 23.81 4 13.79 9 18.00 the impact on family Participant describes taking into account 3 20.00 4 11.43 3 14.29 4 13.79 7 14.00 side effects (general) balanaced with outcome

Factors in decision-making Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes taking into account the 12 35.29 9 37.50 8 33.33 9 37.50 1 20.00 17 34.00 impact on everyday living and ability to live a normal life (Quality of LIfe) Participant describes taking into account the 6 17.65 5 20.83 4 16.67 5 20.83 1 20.00 9 18.00 likely success rate and risks balanced with outcome Participant describes primarily taking into 8 23.53 4 16.67 2 8.33 6 25.00 2 40.00 9 18.00 account the advice of their clinician Participant describes taking into account the 7 20.59 3 12.50 5 20.83 3 12.50 0 0.00 9 18.00 impact on family Participant describes taking into account 3 8.82 3 12.50 5 20.83 4 16.67 2 40.00 7 14.00 side effects (general) balanaced with outcome

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Participants in regional/rural areas reported taking noted that this was in relation to being more assertive into account success rate balanced with outcome less and informed: frequently than participants in metropolitan areas “Well, it has changed in the way that ... Well, the (4.76% compared to 27.59% for metropolitan approach of the doctor in the treatment, explaining participants). They also taking into account the impact it, has helped a lot for me to understand what is on their family more frequently than participants in going on with my body and also what the plan of the metropolitan areas (23.81% compared to 13.79% for doctor is. And that is very helpful and I appreciate metropolitan participants). Participants with class that, because it has given me another outlook or I/class II disease reported taking into account the another perspective to treatment. Not like in the impact on everyday living less frequently than past, if a doctor tells me, "Oh, you just take this like participants with class III/class IV disease (26.67% that," and no explanation or that. So you just take it compared to 37.14% for class 3/class 4 disease). without really finding out if this will be good for me Participants with class I/class II disease described or what. That's it.” [Participant 24] taking into account success rate balanced with outcome more frequently than participants with class “Definitely. Yeah I think, well I feel, I think initially, III/class IV disease (26.67% compared to 14.29% for because I was quite shell shocked, I would generally class III/class IV disease) and there were no just go with whatever I was told to do. I think since participants with class I/class II disease that described then, I feel like I'm, what's the word? I feel more primarily taking into account the advice of their empowered to make my own medical decisions and clinician (25.71% for class III/class IV participants). be able to find resources and people that I can talk to Participants with arrhythmias described primarily about my different options.” [Participant 32] taking into account the advice of their clinician less “Absolutely. Yeah. I think so. As, I've become more frequently than the general cohort (8.33% compared educated. I think when you've got something like this to 18.00% for the general cohort). you end up becoming a professional in your own diagnosis. You're own disease. As you learn more, Changes in decision-making you take more into account and you become a little bit more open minded I think, and not so fearful of In the final question about decision-making, your disease. I'm not scared of my disease anymore. I participants were asked whether they felt the way used to be terrified of it. I used to be terrified of my they made decisions had changed over time since own heart. But now I'm not. Yeah. For sure. I think they were diagnosed. The most common theme was I've definitely, definitely changed in that aspect.” that participants primarily made decisions in the same [Participant 33] way. For those who had changed the way they make decisions, there were 15 participants (30.00%) that

Chronic Heart Failure 2017 Australian PEEK Study 78 Section 4 Participants from regional/rural areas reported making decisions in the same way more frequently than participants from metropolitan areas (47.62% compared to 34.48% for participants in metropolitan areas). They also described being assertive and more informed less frequently than metropolitan participants (9.52% compared to 44.83% for participants in metropolitan areas). Participants with hypertension reported making decisions in the same way more frequently than the general cohort (50.00% compared to 40.00% in the general cohort).

Table 4.6: Decision-making over time

Has the way decisions are made Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 changed over time? n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes having the same 8 53.33 12 34.29 10 47.62 10 34.48 20 40.00 approach over time Participant describes having a more 4 26.67 11 31.43 2 9.52 13 44.83 15 30.00 informed, more assertive, more considered Participant describes being more 0 0.00 4 11.43 2 9.52 2 6.90 4 8.00 relaxed/perspective Other 4 26.67 7 20.00 6 28.57 5 17.24 11 22.00

Has the way decisions are made Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants changed over time? (n=34) (n=24) (n=24) (n=24) (n=5) n=50 n= % n= % n= % n= % n= % n= % Participant describes having the same 14 41.18 11 45.83 9 37.50 12 50.00 4 80.00 20 40.00 approach over time Participant describes having a more 10 29.41 8 33.33 11 45.83 7 29.17 0 0.00 15 30.00 informed, more assertive, more considered Participant describes being more 3 8.82 1 4.17 1 4.17 1 4.17 0 0.00 4 8.00 relaxed/perspective Other 7 20.59 4 16.67 3 12.50 4 16.67 1 20.00 11 22.00

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Chronic Heart Failure 2017 Australian PEEK Study 79 Section 5 Section 5 Treatment and health service provision

Chronic Heart Failure 2017 Australian PEEK Study Section 5

Section 4: Experience of treatment Summary Treatments experienced • The most commonly treatments reported were beta blockers (n=37; 74.00%), followed by diuretics (n=35; 70.00%), Aspirin (n=34; 68.00%) and statins (n=33; 66.00%). There were 24 participants (48.00%) that reported being on Angiotensin II receptor blockers and 24 participants (48.00%) that reported being on ACE inhibitors. There were also 17 participants (34.00%) that reporting they have a pacemaker or implantable cardiac defibrillator. • In relation to treatments, mean quality of life scores ranges from 3.58 to 4.32, that is, all quality of life scores were within the ‘life was distressing’ to ‘Life was average’ range. The treatments that scored the least impact on quality of life were Aspirin (average score 4.32), angiotensin II receptor blockers (average score 4.25) and calcium channel blockers (average score 4.00). The treatments that scored the most impact on quality of life were ACE inhibitors (average score 3.58), glycosides (average score 3.69) and statins (average score 3.76). • The treatments that had a mean effectiveness score of at least 4 (Effective) were diuretics (average score 4.06) and pacemaker/implantable cardiac defibrillator (average score 4.35). There were five treatments that scored in the ‘Moderately effective’ range, those were Aspirin (average score 3.94), calcium channel blockers (average score 3.78), beta blockers (average score 3.62), and angiotensin II receptor blockers (average score 3.38). The treatments that were scored as being ‘Somewhat effective’ were statins (average score 2.97) and glycosides (average score 2.85). • In relation to coping with side effects, there 16 participants that described having side effects, however learning to live them (n=16; 32.00%). Within this this theme, there was an acceptance that side effects were part of life and part of the treatment doing its job. • There was a broad range of difficult side effects mentioned by participants including fogginess, nausea, bowel control, stiff legs, fatigue, hair loss, sun sensitivity and headaches, however there were only two themes that were noted more than five times across the study population. The most common theme in relation to side effects that were difficult to cope with was dizziness (n=7; 14.00%) and the second most common theme was that there was nothing that they were not able to cope with (n=5; 10.00%). In relation to dizziness, participants spoke about the impact on their everyday living and ability to function normally. Changes in medication • Participants were asked whether they had ever needed to change medications. The main changes in medication noted were in relation to side effects or the participant not being able to tolerate a specific treatment (n=11; 22.00%). This was followed by a change in the dose of medication (n=10; 20.00%). In relation to the change in medication due to side effects, participants spoke about also changing brand of treatment as a solution. In relation to sub-group variations, participants in regional/rural areas described a change in medication (change in dose) less frequently than participants in metropolitan areas (9.52% compared to 27.59% in metropolitan areas). • The majority of participants described that their doctor has explained the reason for any change in medication, there were however seven participants (14.00%) that noted there was no explanation given. These participants also described coming up with their own rationale for the change in the absence of an explanation by their doctor. Adherence to medication • Participants were asked how long they stick with a therapy before they think it might not be working or give up on it. 20 participants (40.00%) stated that they stick with medications as long as it is prescribed, often noting needing to get the doctor’s permission before they would change anything. There were ten participants (20.00%) that stated they adhere to medications for around one month, with participants commenting about this being the time frame in which they could tolerate side effects. • There was one sub-group variation. Participants with hypertension described adhering to medications as long as prescribed less frequently than the general cohort (29.17% compared to 40.00% in the general cohort).

81 Chronic Heart Failure 2017 Australian PEEK Study Section 5 • Participants were asked what needed to change for them to feel as though a treatment was working. There were three main themes including improvements in general well-being so that they can function and achieve everyday tasks (n=12; 24.00%), maintaining heart rhythm/not having palpitations (n=11; 22.00%) and having more energy/less fatigue (n=11; 22.00%). Complementary therapies • Participants were asked whether they had used any complementary therapies. Half of all participants stated that they used complementary therapies in the form of vitamins and supplements, often coenzyme Q10 (n=25; 50.00%). There were 16 participants (32.00%) that stated that they did not use complementary therapies, noting that they were sceptical of them or worried about how they would interact with their prescribed medication Service provision and affordability • The majority of participants were treated for CHF in the public healthcare system (n=35, 70.00%), most were treated as a public patient (n=27, 54.00%), and had health insurance (n=29, 58.00%).

• The majority of patients never had to cancel healthcare appointments (n=37, 74.00%), and they were never unable to afford essential prescriptions (n=38, 76.00%). However, half of the participants (n=25, 28.00%) at some point found it difficult to pay for basic necessities such as housing, food and electricity. Other costs to participants include the need for a carer (n=15, 30.00%) and changes in employment status resulting in lost income (n=31, 62.00%).

82 Chronic Heart Failure 2017 Australian PEEK Study Section 5 Treatments experienced 66.00%). There were 24 participants (48.00%) that reported being on Angiotensin II receptor blockers Participants were asked in the questionnaire to and 24 participants (48.00%) that reported being on identify the treatments that they had experienced. ACE inhibitors. There were also 17 participants The most commonly treatments reported were beta (34.00%) that reporting have a pacemaker or blockers (n=37; 74.00%), followed by diuretics (n=35; implantable cardiac defibrillator. 70.00%), Aspirin (n=34; 68.00%) and statins (n=33;

Table 5.1: Treatments experienced

Treatment Class I/Class II Class III/Class IV Metropolitan Regional/Rural All participants n=15 n=35 (n=29) (n=21) (n=50) n= % n= % n= % n= % n= % Beta blockers 10 66.67 27 77.14 22 75.86 15 71.43 37 74.00 Diuretics 7 46.67 28 80.00 21 72.41 14 66.67 35 70.00 Asprin 9 60.00 25 71.43 20 68.97 14 66.67 34 68.00 Statins 0 0.00 22 62.86 22 75.86 11 52.38 33 66.00 Angiotensin II receptor blockers 6 40.00 18 51.43 14 48.28 10 47.62 24 48.00 (ARBs) ACE inhibitors 4 26.67 20 57.14 14 48.28 10 47.62 24 48.00 Pacemaker or an implantable cardiac 5 33.33 12 34.29 8 27.59 9 42.86 17 34.00 defibrillator (ICD) Surgery 2 13.33 12 34.29 10 34.48 4 19.05 14 28.00 Glycosides 3 20.00 10 28.57 6 20.69 7 33.33 13 26.00 Salcium channel blocker 4 26.67 5 14.29 8 27.59 1 4.76 9 18.00 Coronary bypass surgery 2 13.33 3 8.57 4 13.79 1 4.76 5 10.00 Vasodilators 0 0.00 2 5.71 2 6.90 0 0.00 2 4.00

Treatment Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) (n=50) n= % n= % n= % n= % n= % n= % Beta blockers 27 79.41 19 79.17 19 79.17 20 83.33 3 60.00 37 74.00 Diuretics 25 73.53 17 70.83 17 70.83 18 75.00 3 60.00 35 70.00

Asprin 23 67.65 17 70.83 17 70.83 18 75.00 2 40.00 34 68.00 Statins 24 70.59 20 83.33 20 83.33 22 91.67 4 80.00 33 66.00 Angiotensin II receptor blockers 16 47.06 10 41.67 10 41.67 14 58.33 2 40.00 24 48.00 (ARBs) ACE inhibitors 20 58.82 10 41.67 10 41.67 10 41.67 4 80.00 24 48.00

Pacemaker or an implantable 13 38.24 6 25.00 6 25.00 6 25.00 3 60.00 17 34.00 cardiac defibrillator (ICD) Surgery 10 29.41 7 29.17 7 29.17 6 25.00 3 60.00 14 28.00 Glycosides 9 26.47 8 33.33 8 33.33 5 20.83 3 60.00 13 26.00 Salcium channel blocker 6 17.65 6 25.00 6 25.00 5 20.83 3 60.00 9 18.00 Coronary bypass surgery 2 5.88 3 12.50 3 12.50 4 16.67 0 0.00 5 10.00 Vasodilators 2 5.88 2 8.33 2 8.33 2 8.33 1 20.00 2 4.00

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80 70 60 50 40 30 20 10 0 Beta Diuretics Asprin Statins Angiotensin ACE Pacemaker Surgery Glycosides Salcium Coronary Vasodilators blockers II receptor inhibitors or an channel bypass blockers implantable blocker surgery (ARBs) cardiac defibrillator (ICD)

Figure 5.1: Treatments experienced (% of all participants)

As a follow-up question (within the questionnaire), quality of life were Aspirin (average score 4.32), participants were asked to rate their quality of life on angiotensin II receptor blockers (average score 4.25) a scale of 1 to 7, while using each specific treatment and calcium channel blockers (average score 4.00). (with 1 being ‘Life was very distressing and 7 being The treatments that scored the most impact on ‘Life was great’). Mean quality of life scores ranges quality of life were ACE inhibitors (average score from 3.58 to 4.32, that is, all quality of life scores were 3.58), glycosides (average score 3.69) and statins with the ‘life was distressing’ to ‘Life was average’ (average score 3.76). range. The treatments that scored the least impact on

Table 5.2: Treatments experienced and mean quality of life Treatment n= Range Mean Life was very Life was Life was a little Life was average Life was good Life was very Life was great QoL distressing distressing distressing (Score = 4) (Score = 5) good (Score = 7) score (Score = 1) (Score = 2) (Score = 3) (Score = 6)

n= % n= % n= % n= % n= % n= % n= % Asprin 34 2 (min) – 4.32 0 0.00 1 2.94 0 0.00 21 61.76 11 32.35 1 2.94 0 0.00 6 (max) Angiotensin II 24 3 (min) – 4.25 0 0.00 0 0.00 6 25.00 8 33.33 9 37.50 0 0.00 1 4.17 receptor blockers 7 (max (ARBs) Calcium channel 9 2 (min) – 4.00 0 0.00 2 22.22 1 11.11 1 11.11 5 55.56 0 0.00 0 0.00 blocker 5 (max Beta blockers 37 2 (min) – 3.92 0 0.00 5 13.51 4 10.81 18 48.65 9 24.32 1 2.70 0 0.00 6 (max Pacemaker or an 17 1 (min) – 3.88 1 5.88 0 0.00 6 35.29 5 29.41 4 23.53 0 0.00 1 5.88 implantable 7 (max) cardiac defibrillator (ICD) Diuretics 35 2 (min) – 3.80 0 0.00 4 11.43 12 34.29 8 22.86 10 28.57 0 0.00 1 2.86 7 (max) Statins 33 1 (min) – 3.76 2 6.06 3 9.09 3 9.09 19 57.58 5 15.15 1 3.03 0 0.00 6 (max) Glycosides 13 2 (min) – 3.69 0 0.00 3 23.08 3 23.08 3 23.08 3 23.08 1 7.69 0 0.00 6 (max) ACE inhibitors 24 1 (min) – 3.58 2 8.33 1 4.17 5 20.83 13 54.17 3 12.50 0 0.00 0 0.00 5 (max)

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5 4.5 4 3.5 3 2.5 2 1.5 1 0.5 0 Asprin Angiotensin Calcium Beta Pacemaker Diuretics Statins Glycosides ACE II receptor channel blockers or an inhibitors blockers blocker implantable (ARBs) cardiac defibrillator (ICD)

Figure 5.2: Treatments experienced and mean quality of life

A second follow-up question was asked in relation to the ‘Moderately effective’ range, those were Aspirin how effective the participant felt the treatment was (average score 3.94), calcium channel blockers on a scale of 1 to 5 (with 1 being ineffective and 5 (average score 3.78), beta blockers (average score being very effective). The treatments that had a 3.62), and angiotensin II receptor blockers (average mean effectiveness score of at least 4 (Effective) were score 3.38). The treatments that were scored as being diuretics (average score 4.06) and ‘Somewhat effective’ were statins (average score pacemaker/implantable cardiac defibrillator (average 2.97) and glycosides (average score 2.85). score 4.35). There were five treatments that scored in

Table 5.3: Treatments experienced and effectiveness Treatment n= Range Mean Ineffective Somewhat effective Moderately effective Effective Very effective Effective (Score = 1) (Score = 2) (Score = 3) (Score = 4) (Score = 5) ness score n= % n= % n= % n= % n= % Pacemaker or an implantable 17 3 (min) 4.35 0 0.00 0 0.00 1 0.06 9 0.53 7 0.41 cardiac defibrillator (ICD) - 5(max) Diuretics 35 2 (min) 4.06 0 0.00 2 0.06 8 0.23 11 0.31 14 0.40 - 5(max) Asprin 34 2 (min) 3.94 0 0.00 1 0.03 21 0.62 11 0.32 1 0.03 - 5(max) Calcium channel blocker 9 2 (min) 3.78 0 0.00 1 0.11 2 0.22 4 0.44 2 0.22 - 5(max Beta blockers 37 1 (min) 3.62 2 0.05 5 0.14 5 0.14 18 0.49 7 0.19 - 5(max Angiotensin II receptor 24 1 (min) – 3.50 1 0.04 5 0.21 4 0.17 9 0.38 5 0.21 blockers (ARBs) 5 (max) ACE inhibitors 24 1 (min) – 3.38 4 0.17 0 0.00 5 0.21 13 0.54 2 0.08 5 (max) Statins 33 2 (min) – 2.97 0 0.00 8 0.24 4 0.12 10 0.30 6 0.18 5 (max) Glycosides 13 1 (min) – 2.85 4 0.31 2 0.15 1 0.08 4 0.31 2 0.15 5 (max)

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0 Pacemaker Diuretics Asprin Calcium Beta Angiotensin ACE Statins Glycosides or an channel blockers II receptor inhibitors implantable blocker blockers cardiac (ARBs) defibrillator (ICD)

Figure 5.3: Treatments experienced and effectiveness

Side effects of treatment the last six years to listen to the symptoms that your body produces, and then you can actually cope with Participants were guided to reflect on the side effects whatever it's doing.” [Participant 17] that they had experienced from their various treatments. They were then asked two, separate “I don't know. I've kind of adjusted with each one. questions in relation to the side effects that they felt The teeth grinding, and the hair loss, and the gum they could cope with, and the side effects that were pain, and all that kind of stuff, that doesn't bother very difficult to cope with. me. I'm not one that stresses over how I look or whatever. I'm not stressed because I'm missing a Within this question, many participants were unable tooth, or my hair is very thin. Best coped with. I don't to articulate the exact side effects they could cope know. I guess those. Yeah. It's something that you with, and instead went straight into talking about have to do.” [Participant 33] difficult side effects. There 16 participants that described having side effects, however learning to live “One of them, and I can't remember the name of the them (n=16; 32.00%). Within this this theme, there drug now, it caused me to throw up. I had asthma, was an acceptance that side effects were part of life which I don't always suffer with. That changed that and part of the treatment doing its job: quickly. The only other side effects that I, sort of, talk about is probably the ones that most people suffer “Yeah, the low blood pressure, the low heart rate, all from. Things like nausea, vomiting, that type of those good things, but then they're good for a thing. That you learn to live with that. Diarrhoea. reason, so it's like ... you've just got to live with it. Diarrhoea, that type of thing. But it's better than not Sounds terrible doesn't it?.” [Participant 3] having your treatment so you put up with it. Dry mouth. Dry mouth, lack of taste, that type of thing “Look, I think I cope with all of it quite well because but you just live with it.” [Participant 37] I'm quite aware of my body. I think I've learnt over

Chronic Heart Failure 2017 Australian PEEK Study 86 Section 5

Table 5.4: Side effects that participants could cope with

Side effects participants are able to Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 cope with n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes coping with side 5 33.33 11 31.43 5 23.81 11 37.93 16 32.00 effects and learning to live with them Participant describes not having any side 3 20.00 4 11.43 2 9.52 5 17.24 7 14.00 effects

Side effects participants are able to Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants cope with (n=34) (n=24) (n=24) (n=24) (n=5) n=50 n= % n= % n= % n= % n= % n= % Participant describes coping with side 9 26.47 6 25.00 8 33.33 9 37.50 2 40.00 16 32.00 effects and learning to live with them Participant describes not having any side 5 14.71 4 16.67 4 16.67 5 20.83 2 40.00 7 14.00 effects

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Figure 5.4: Side effects that participants could cope with (% of all participants)

There was a broad range of difficult side effects “The having to sit upright to sleep was terrible, and mentioned by participants including fogginess, the dizziness was bad there for a while and really nausea, bowel control, stiff legs, fatigue, hair loss, sun concerned me 'cause I was nearly sort of ... Sitting up sensitivity and headaches, however there were only in bed and nearly keeling over. And the fact that I two themes that were noted more than five times couldn't walk like from the car to the supermarket.” across the study population. The most common [Participant 27] theme in relation to side effects that were difficult to cope with was dizziness (n=7; 14.00%) and the second “I just feel really bad. I can't do anything. I feel like most common theme was that there was nothing that I'm going to faint. I've got to go and sit down.” they were not able to cope with (n=5; 10.00%). In [Participant 47] relation to dizziness, participants spoke about the impact on their everyday living and ability to function “Well, I had to go off the medication with the low normally: blood pressure, so I could not cope with that because of the dizziness.” [Participant 10]

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Table 5.5: Side effects that participants found difficult to cope with Side effects that are difficult to Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 cope with n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % 2 13.33 5 14.29 5 23.81 2 6.90 7 14.00 Dizziness Non that they were not able to 2 13.33 3 8.57 2 9.52 3 10.34 5 10.00 cope with 1 6.67 3 8.57 1 4.76 3 10.34 4 8.00 Bad dreams

Side effects that are difficult to cope Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants with (n=34) (n=24) (n=24) (n=24) (n=5) n=50 n= % n= % n= % n= % n= % n= % Dizziness 6 17.65 3 12.50 5 20.83 3 12.50 0 0.00 7 14.00 Non that they were not able to cope 3 8.82 2 8.33 1 4.17 4 16.67 0 0.00 5 10.00 with Bad dreams 1 2.94 2 8.33 1 4.17 0 0.00 0 0.00 4 8.00

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Figure 5.5: Side effects that participants found difficult to cope with (% of all participants)

Changes in medication thought going across to Atacand ... it's eased it back. It's not quite as bad as it was.” [Participant 26] Participants were asked whether they had ever “Yeah, generally it was the low blood pressure and needed to change medications. The main changes in they couldn't get to the dosages that were optimal medication noted were in relation to side effects or for the treatment. So they needed to try others that the participant not being able to tolerate a specific might be a bit more tolerated by my low blood treatment (n=11; 22.00%). This was followed by a pressure.” [Participant 32] change in the dose of medication (n=10; 20.00%). In relation to the change in medication due to side “That was in the early introduction. I'd only done it effects, participants spoke about also changing brand for a few weeks, and I was just awake all night of treatment as a solution: coughing and still having to go to work the next day, and so he decided that I should try something “Oh, yeah. We went from Coversyl to one of the different.” [Participant 48] other ones. Atacand. To Atacand, so that was when The majority of participants described that their we'd talked to him about this cough that just didn't doctor has explained the reason for any change in seem to go, and they'd said to us, "There's one of the medication, there were however seven participants side effects that comes from these tablets," but we Chronic Heart Failure 2017 Australian PEEK Study 88 Section 5 (14.00%) that noted there was not explanation given. “No. He just said, "We need to change medication." These participants also described coming up with And I think the cardiologist at the stress echo had their own rationale for the change in the absence of asked me what I was on and said that needs to an explanation by their doctor: change.” [Participant 36] “Not really. I just presumed because I was still, even “No. Actually no he didn't. In my mind I just though I take, with the furosemide, I take two in the assumed, oh well the Toprol mustn't be working or it morning and then one again at lunch time. I am was because it was that caused the cardiac arrest always still having problems with fluid which seems perhaps. In my own head I thought I might have to settle in my chest and also in one of my hands, explained it to myself that perhaps Carvedilol is and obviously my legs. He didn't go into detail, no. better for that condition.” [Participant 18] He just said that I needed to be ... to try taking this In relation to sub-group variations, participants in other medication. If it has made a difference, it has regional/rural areas described a change in medication probably only been a slight difference.” [Participant (change in dose) less frequently than participants in 23] metropolitan areas (9.52% compared to 27.59% in metropolitan areas).

Table 5.6: Changes in medication

Changes in medication Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant had a change in 3 20.00 8 22.86 4 19.05 7 24.14 11 22.00 medication because of side effects/better to tolerate Participant had a change in 3 20.00 7 20.00 2 9.52 8 27.59 10 20.00 medication (Change dose/titrating) Participant describes change in 3 20.00 4 11.43 3 14.29 4 13.79 7 14.00 medication not being explained

Changes in medication Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant had a change in 6 17.65 4 16.67 7 29.17 4 16.67 0 0.00 11 22.00 medication because of side effects/better to tolerate Participant had a change in 7 20.59 6 25.00 5 20.83 6 25.00 0 0.00 10 20.00 medication (Change dose/titrating) Participant describes change in 6 17.65 6 25.00 5 20.83 4 16.67 1 20.00 7 14.00 medication not being explained

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0 Participant had a change in medication Participant had a change in medication Participant describes change in because of side effects/better to tolerate (Change dose/titrating) medication not being explained

Figure 5.6: Changes in medication (% of all participants)

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Adherence to medications participants commenting about this being the time frame in which they could tolerate side effects: Participants were asked how long they stick with a therapy before they think it might not be working or “My theory is I give it a month minimum. Can't sort give up on it. 20 participants (40.00%) stated that they of take one thing one day and say oh well it didn't stick with medications as long as it is prescribed, often work. You've got to give it a few weeks. I've noticed noting needing to get the doctor’s permission before with any medications I go on, it will take at least a they would change anything: week to two weeks before you notice anything different. Depending on what you really take. I mean “Well if I get side effects from it I usually contact the some of them will be instant. Basically, I give Doctor and say this is what's happening and it's everything a month and see how it goes.” either up to him to say, "Well battle on a bit longer [Participant 2] or give up." You know? I wouldn't just give up if I think it's not working. If it is affecting me I question “I'd probably give it a fair go, so maybe a month, as it. If I feel it's not doing me any good I wouldn't just a guess, depends on how serious the side effects stop it without Doctors' permission.” [Participant 5] were I guess, but if they were fairly mild I would stick with it, until I thought "No no no, it's really not “I would usually stick with it until at least my next working." So I'd give it a fair go, yeah.” [Participant appointment, so that I can tell him, you know, "This 15] is what's been happening. Do we think that it's a good idea?" Unless it was something like emergency “I'd say usually I try to give it about four or five or that was on the "See a doctor if it's these things," weeks. If I have side effects to it or not necessarily then I would take myself up to emergency. I wouldn't side effects but just adverse effects, I will generally, even bother with my GP.”. [Participant 18] that'll be shorter. But yeah, as long as things don't get worse, I'll give it a good five or so weeks.” “It depends. If it's something that a specialist has [Participant 32] asked me to do, I'll keep doing it until I go back and see him again, or see a doctor in the interim and There was one sub-group variation. Participants with discuss it with them.” [Participant 48] hypertension described adhering to medications as long as prescribed less frequently than the general There were ten participants (20.00%) that stated they cohort (29.17% compared to 40.00% in the general adhere to medications for around one month, with cohort).

Table 5.7: How long patients stick to a therapy

How long patients stick with a new Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 therapy n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % As long as prescribed in 5 33.33 15 42.86 8 38.10 12 41.38 20 40.00 consultation with clinician - stick with it 4 26.67 6 17.14 4 19.05 6 20.69 10 20.00 1 Month 2 13.33 3 8.57 2 9.52 3 10.34 5 10.00 3 months

How long patients stick with a new Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants therapy (n=34) (n=24) (n=24) (n=24) (n=5) n=50 n= % n= % n= % n= % n= % n= % As long as prescribed in consultation 14 41.18 9 37.50 11 45.83 7 29.17 2 40.00 20 40.00 with clinician - stick with it 1 Month 9 26.47 8 33.33 6 25.00 8 33.33 1 20.00 10 20.00 3 months 2 5.88 2 8.33 1 4.17 4 16.67 1 20.00 5 10.00

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0 As long as prescribed in 1 Month 3 months consultation with clinician - stick with it Figure 5.7: How long patients stick to a therapy (% of all participants)

Impact of treatment able to do the things I enjoy. That would probably be, yeah that would be it.” [Participant 46] Participants were asked what needed to change for them to feel as though a treatment was working. As noted, there were 11 participants (22.00%) that There were three main themes including described needing to have more energy or less fatigue improvements in general well-being (n=12; 24.00%), in order to feel like a treatment is working. maintaining heart rhythm/not having palpitations Participants spoke about the feeling of having more (n=11; 22.00%) and having more energy/less fatigue confidence or the feeling of achievement when their (n=11; 22.00%). energy levels improve: Participants that described needed to have “Well I started to get some energy back. I started to improvements in general well-being so that they can breathe a bit easier and you know when that function and achieve everyday tasks: happens well you start to feel a bit better in yourself don't you? Yes, yes it was a long road back, it really “Generally I'm just looking to feel better. I guess it was many, many years, it took many, many years. It depends on what it is. I mean if it's something that wasn't something that happened in weeks or affects my appearance I guess I'd want it to stop months, it took years, yes.” [Participant 5] doing that and maybe I'll feel more comfortable in myself. If it's something that affects my energy, I'll “For me, it's an energy thing. If I can feel my energy want to see improvements in my energy levels. It is better, then I know it's the right thing to be doing. doesn't have to be you know, like a full 180, but just If I find that I'm losing energy, then I find that then seeing some level of improvement so that I can do I'd be the one to go, "No, look, I don't see this is the things I need to do”. [Participant 32] gonna work for me because I'm losing power, not gaining power." [Participant 16] “I suppose, that you can get up and do normal things. That you're back to, where you can get up “Yeah, actually I remember thinking when I changed and go for a walk for half and hour and come home. to the Verapamil that time, I remember feeling like I Just your day to day routine. So you can get up and had, had a successful day with the Verapamil take the kids to school and you can get up and go to because I'd got through the day without having a work and come home, that sort of thing.” nap. That was like a little milestone for me. [Participant 37] Nowadays I very rarely have a nap during the day now, unless I've been doing a lot of physical activity. “I guess I would have to say how I felt. If the Nowadays a successful day is if I've got energy all treatment worked, then I could return to a sort of day. A successful treatment is that I feel good all day normal life. As normal as I could achieve at that long.” [Participant 33] time. And to be able to look after my kids and to be

Chronic Heart Failure 2017 Australian PEEK Study 91 Section 5

Table 5.8: What needs to change to know a treatment has worked

What needs to change to know a Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 treatment has worked n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % General well-being and functioning 3 20.00 9 25.71 5 23.81 7 24.14 12 24.00 Maintaining heart rhythm/no 4 26.67 7 20.00 4 19.05 7 24.14 11 22.00 palpitations More energy/Less fatigue 4 26.67 7 20.00 6 28.57 5 17.24 11 22.00

Breathing improved 1 6.67 4 11.43 2 9.52 3 10.34 5 10.00 Clinical tests that demonstrate 1 6.67 4 11.43 0 0.00 5 17.24 5 10.00 improvement

What needs to change to know a Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants treatment has worked (n=34) (n=24) (n=24) (n=24) (n=5) n=50 n= % n= % n= % n= % n= % n= % General well-being and functioning 8 23.53 6 25.00 6 25.00 10 41.67 1 20.00 12 24.00 Maintaining heart rhythm/no 8 23.53 9 37.50 6 25.00 6 25.00 1 20.00 11 22.00 palpitations More energy/Less fatigue 8 23.53 6 25.00 7 29.17 3 12.50 1 20.00 11 22.00 Breathing improved 4 11.76 3 12.50 4 16.67 2 8.33 1 20.00 5 10.00 Clinical tests that demonstrate 2 5.88 1 4.17 1 4.17 1 4.17 0 0.00 5 10.00 improvement

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Figure 5.8: What needs to change to know a treatment has worked

Use of complementary therapies “No I don’t touch them. Because then I don’t understand the ramifications and what are their Participants were asked whether they had used any complications are..” [Participant 30] complementary therapies. Half of all participants stated that they used complementary therapies in the “I really haven't, no. Yeah, I'm not sure, a lot of form of vitamins and supplements, often coenzyme them. I tend to take notice of what the GP or the Q10 (n=25; 50.00%). cardiologist says. I'm not really much a believer in these witch doctors.” [Participant 40] There were 16 participants (32.00%) that stated that they did not use complementary therapies, noting “No. I'm very careful. I'm too scared to take anything that they were sceptical of them or worried about like natural medicine and things like that, because how they would interact with their prescribed they can affect the long QT as well, some of them. medication: I'm very careful, I don't take anything that my doctor doesn't prescribe. I complain to him.” [Participant 42] Chronic Heart Failure 2017 Australian PEEK Study 92 Section 5

Table 5.9: Use of complementary therapies

Use of complementary therapies Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes using 6 40.00 19 54.29 9 42.86 16 55.17 25 50.00 vitamins/supplements Participant describes not using 5 33.33 11 31.43 7 33.33 9 31.03 16 32.00 complementary therapies Participant describes taking up 4 26.67 2 5.71 2 9.52 4 13.79 6 12.00 exercise

Use of complementary therapies Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes using 16 47.06 14 58.33 14 58.33 13 54.17 2 40.00 25 50.00 vitamins/supplements Participant describes not using 11 32.35 6 25.00 6 25.00 8 33.33 2 40.00 16 32.00 complementary therapies Participant describes taking up 5 14.71 4 16.67 3 12.50 4 16.67 1 20.00 6 12.00 exercise

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Figure 5.9: Use of complementary therapies (% of all participants)

Service provision and affordability The majority of patients never had to cancel healthcare appointments (n=37, 74.00%), and they Details about the healthcare system were participants were never unable to afford essential prescriptions were treated for CHF and financial complications from (n=38, 76.00%). However, half of the participants treatment are listed in Table 5.10. The majority of (n=25, 28.00%) at some point found it difficult to pay participants were treated for CHF in the public for basic necessities such as housing, food and healthcare system (n=35, 70.00%), most were treated electricity. Other costs to participants include the as a public patient (n=27, 54.00%), and had health need for a carer (n=15, 30.00%) and changes in insurance (n=29, 58.00%). employment status resulting in lost income (n=31, 62.00%).

Chronic Heart Failure 2017 Australian PEEK Study 93 Section 5 Table 5.10: Service provision and affordability Private health insurance N=50 % Yes 29 58.00 No 21 42.00 Treated as public or private patient N=50 % Equally public and private 9 18.00 Private 14 28.00 Public 27 54.00 Primary hospital system treated in N=50 % Both public and private 4 8.00 11 22.00 Private Public 35 70.00 Had to delay or cancel healthcare appointments due to affordability N=50 % Never 37 74.00 Rarely 7 14.00 Sometimes 5 10.00 Often 1 2.00 Unable to fill prescription due to cost N=50 % Never 38 76 Rarely 7 14 Sometimes 5 10 Often 0 0 Difficult to pay for basic needs as a result of CHF diagnosis N=50 % Never 25 50 Rarely 11 22 Sometimes 13 26 Often 1 2 Had to pay for additional carers due to CHF N=50 % Yes 15 30.00 No 35 70.00 Change in employment due to CHF (can choose more than one option) N=50 % I have had to quit my job 23 46.00 I have reduced the number of hours i work 6 12.00 I have taken leave with pay 7 14.00 I have taken leave without pay 2 4.00 I was retired or did not have a job when diagnosed 4 8.00 My work status has not changed 6 12.00 I have accessed my super 6 12.00 Change in carer job status (can choose more than one option) N=50 % My carer had to quit their job 2 4.00 My carer has reduced the number of hours they work 7 14.00 My carer has taken leave with pay 6 12.00 My carer has taken leave without pay 5 10.00 My carer was retired or did not have a job when diagnosed 5 10.00 My carers work status has not changed 29 58.00 Out of pocket expenses burden N=50 % Extremely significant 5 10.00 Moderately significant 5 10.00 Somewhat significant 18 36.00 Slightly significant 8 16.00 Not significant at all 14 28.00

Chronic Heart Failure 2017 Australian PEEK Study 94 Section 6

Section 6 Information and communication

Chronic Heart Failure 2017 Australian PEEK Study Section 6

Section 6: Experience of information Summary Access to information • The majority of participants (n=23; 46.00%) had accessed information online, followed by information that they had sourced though peers (n=15; 30.00%). • There were 15 participants (30.00%) that described accessing information through nurses or cardiac rehabilitation, however participants with Class I/Class II disease accessed information this way less frequently (13.33% compared to 30.00% in the general cohort). There was also a variation in relation to sub- groups and access to information. Rural/Regional participants described accessing information through speaking with their doctor less frequently than participants living in a metropolitan area and less frequently than the general cohort (4.67% compared to 31.03% in metropolitan areas and 20.00% in the general population). Information given by healthcare professionals and searched for independently. • 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 disease management (64.00%), treatment options (56.00%) and dietary information (54.00%) were most frequently given to participants by healthcare professionals, and information about complementary therapies (6.00%), how to interpret test results (12.00%) and clinical trials (16.00%) were give least often (Figure 6.45). Information about disease cause (48.00%), disease management (46.00%), and diet (44.00%) were most often searched for independently by participants, and clinical trials (10.00%) and complementary therapies (20.00%) were the least searched for. Most trusted information sources • Participants were asked to rank which information source that they most trusted, where 1 is the most trusted and 4 is the least trusted. A weighted average is presented in Figure 6.52. With a weighted ranking, the higher the score, the more trusted the source of information to the participant. Across all participants, information from the participants’ hospital or clinic was the most trusted, followed by not for profit or charitable organisations Information that is helpful • In relation to information that had been helpful, there were three key themes including specific information on the mechanisms of disease (n=12; 24.00%), communicating with other patients (n=11; 22.00%), and being able to speak with nurse (n=8, 16.00%). Information that is not helpful • The main theme in this section was that all information is useful (n=16; 32.00%). Where participants noted that there was information that was not helpful, this fell into three main themes including the cardiologist generally not being helpful (n=12; 24.00%), information that was not specific to chronic heart failure (n=8; 16.00%) and information that was not age-appropriate (n=6; 12.00%). 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. Close to half of the participants (n=21; 42.00%) described a preference for talking to someone. The second most common theme was accessing information online (n=10; 20.00%). There were no participants that had a preference for phone Apps.

• There was one variation between subgroups. Participants with class I/Class II described a preference for talking to someone less frequently than participants with class III/class IV disease and less frequently than the general cohort (20.00% compared to 51.43% of class III/class IV participants and 42.00% in the genera cohort).

96 Chronic Heart Failure 2017 Australian PEEK Study Section 6 Timing of information • Participants were asked to reflect on their experience and think about when they were most receptive to receiving information, not when they actually received the information, but when they felt they could take it all in. There two key themes identified including at or close to diagnosis (n=18; 36.00%) and about a month or so after diagnosis, often following discharge from hospital (n=14; 28.00%). • There was one variation in relation to sub-groups. Participants with hypertension described being more receptive to information following discharge/after a month or so more frequently than the general cohort (45.83% compared to 28.00% in the general cohort). 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 had very good communication with their nurse (n=24; 48.00%). There were 15 participants (30.00%) that were satisfied with the communication they had with health professionals, while an additional 15 participants (30.00%) described having difficulties in relation to communication with their cardiologist. • There were two variations in relation to sub-groups. Participants in regional/rural areas spoke about being satisfied with communication less frequently than participants in metropolitan areas (19.05% compared to 37.93% in metropolitan areas) and also described having difficult communication with their specialist more frequently than participants in metropolitan areas (42.86% compared to 20.69% in metropolitan areas). Respect • The majority of participants responded that they felt they had been treated respectfully (n=32; 64.00%), while 17 participants (34.00%) described being treated respectfully most of the time. • Participants that noted that they had not always been treated respectfully (n=17; 34.00%) spoke about being treated respectfully for the most part, however they described single incidents or issues with particular health professionals Knowledge and understanding of condition • Overall, participants scored well in the Partners in Health questionnaire, with a very good score for knowledge, adherence to treatment, and management of symptoms, and a good score for coping and the total score. • Participants with Class I and II disease scored lower Partners in Health – Coping compared with Class III and IV, indicating that Class I and IV disease were better able to cope. • Participants that live in major cities scored higher in the PIH – Adherence to Treatment subscale compared to those that live in regional areas, indicating that those that live in cities have a better understanding of adherence to treatment than those in regional areas. • Partners in health management of symptoms, coping and total score was higher for those with arthritis compared to those without. • Partners in health coping and total score was higher for those with hypertension compared to those without. • No differences in PIH subscales were observed by sleep problem status, arrhythmia, and hyperkalemia status.

97 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Access to information it's not they are ..., and say a quick stress that they're not doctors. But I get clearly a lot of my information Participants were asked what information they had from them, from life experiences. I don't really get a accessed in relation to heart failure. The majority of lot from the medical professions, not a lot of participants (n=23; 46.00%) had accessed information information really.” [Participant 42] online, followed by information that they had sourced though peers (n=15; 30.00%). In this context, peer-to- There were 15 participants (30.00%) that described peer information primarily refers to connecting with accessing information through nurses or cardiac other patients on social media such as Facebook, and rehabilitation, however participants with I/Class II being directed to sources of information or learning disease accessed information this way less frequently from their experience (this was noted by participants (13.33% compared to 30.00% in the general cohort). across a range of age groups): “I did a heart rehab program. Yes. A six week one, so “Really only what I've been able to find on the that was helpful though, a lot if information there so. internet and so on, I belong to a group That was good. Yeah nothing specific from the Cardiomyopathy Facebook page, which I think I've hospital apart from the discharge notes, that sort of found the most information from them of anything, thing. But nothing specifically about hearts apart and it's just anecdotal stuff that people are saying from this, going to the rehab.” [Participant 15] it's happened to me has anyone found this, and you “I see a heart failure nurse at the hospital. I either get answers to a lot of questions there. When I just see her every couple of months or she rings me, found out I was having this battery replaced I put depending on how busy they are or whatever, but I something up, and I had a barrage of people saying also know that I can call NAME whenever I want. "This will happen, this will happen." And it was a Written information. Nicely packaged and full of little bit overwhelming I'm thinking 'Really, how did healthy heart diet stuff and what heart failure is and you know that?" I was more prepared then when I symptoms of cardiac arrest or heart attacks and went in. That plus, obviously internet looking up what to do. There's lots. Lots. I've been given it a few things there, not really much else actually.” times. I've learned not to trust the internet because [Participant 15] otherwise, everything is cancer.” [Participant 18] “Oh, copious amounts. It's just amazing what is “The heart failure group run by nurses there that actually out there, and talking to other people with it come around and give you lots of information on is the biggest benefit. Understanding what they've how to work with your fluid intake, your diet, things gone through, how they've dealt with it. I've joined to look out for, yeah, lots of that sort of stuff. So, I quite a few forums regarding cardiomyopathy and guess, when it comes to the heart, I've been pretty heart disease, and it's actually good therapy talking lucky in that respect.” [Participant 34] to other people. You know all about the symptoms, how it can be caused, you know, there's numerous There was a variation in relation to sub-groups and ways. We're all different. Yeah, how to cope with it, access to information. Rural/Regional participants basically.” [Participant 17] described accessing information through speaking with their doctor less frequently than participants “There's a lot of the information on the web. I talk to living in a metropolitan area and less frequently than people in the CS, Chronic Heart Failure Society. the general cohort (4.67% compared to 31.03% in They're very informative. I also belong to the Atrial metropolitan areas and 20.00% in the general Fibrillation Society. You get a lot of information from population). people with experiences. You put it in perspective,

98 Chronic Heart Failure 2017 Australian PEEK Study Section 6 Table 6.1: Access to information

Access to information Class 1/Class 2 Class 3/Class 4 Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes self-directed access 7 46.67 16 45.71 10 47.62 13 44.83 23 46.00 to information online Participant describes self-directed, peer- 3 20.00 12 34.29 6 28.57 9 31.03 15 30.00 to-peer access to information (Social media) Participant describes information provided 2 13.33 13 37.15 8 38.09 7 24.14 15 30.00 by nurse/cardiac rehabilitation Participant describes talking with their 4 26.67 6 17.14 1 4.76 9 31.03 10 20.00 doctor Participant describes accessing 2 13.33 3 8.57 2 9.52 3 10.34 5 10.00 Cardiomyopathy Association of Australia

Access to information Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes self-directed access to 18 52.94 10 41.67 10 41.67 13 54.17 4 80.00 23 46.00 information online Participant describes self-directed, peer-to- 8 23.53 8 33.33 8 33.33 9 37.50 1 20.00 15 30.00 peer access to information (Social media) Participant describes information provided 10 29.41 6 25.00 10 41.66 5 20.83 1 20.00 15 30.00 by nurse/cardiac rehabilitation Participant describes talking with their 9 26.47 5 20.83 8 33.33 4 16.67 1 20.00 10 20.00 doctor Participant describes accessing 3 8.82 5 20.83 4 16.67 2 8.33 0 0.00 5 10.00 Cardiomyopathy Association of Australia

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0 Participant describes self- Participant describes self- Participant describes Participant describes talking Participant describes accessing directed access to information directed, peer-to-peer access to information provided by with their doctor Cardiomyopathy Association of online information (Social media) nurse/cardiac rehabilitation Australia

Figure 6.1: Access to information (% of all participants)

Information that was helpful 22.00%), and being able to speak with nurse (n=8, 16.00%). After talking about all of the information that participants had received, they were then asked what In relation to specific information on the mechanisms information had been helpful. There were three key of disease (n=12; 24.00%), this referred to information themes noted in this section including specific that helped participants understand what was information on the mechanisms of disease (n=12; happening to them and what to expect. It was noted 24.00%), communicating with other patients (n=11; that this also helped them be more at ease with their condition:

99 Chronic Heart Failure 2017 Australian PEEK Study Section 6 “The actual what is going on with the mechanics and “But I think now, six years on, the Facebook thing, what was going to happen, knowing in my mind talking to other people who had these same issues, I what was going to happen, instead of going in blind, think that's probably the best. Just having to go the not knowing what could go wrong. I wanted to know cardiologist, I didn't get much from them, you really everything, whether things could go wrong, or things just get the 'how have you been feeling' and they run that would result if everything went right. And that's all of these tests and you're doing well, see you in a what I was mainly concerned about. What are they year.” [Participant 15] going to actually do to me?” [Participant 9] “Good question. From the social media perspective, I “Whatever information I can get is helpful, because if know that all around the world there are a lot of I'm reading up about ECGs and ... it's all helpful, people who have a chronic heart condition similar to because if I understand to some degree what is mine. In one way, that is quite comforting, because I happening to me, I'm more likely to feel at ease, if know I'm not on my own. I know whether ... at the that makes sense. Does that make sense? I want to doctors surgery, everybody's private, and that's know what's happening, basically. If I don't read up, I okay. I have no problem with that. Nobody talks to will ask.” [Participant 39] anybody sort of thing, it's all private, so that's where that stays, but to get onto social media and then “There was a really fantastic YouTube presentation. you're talking to people from all around the world Only five minutes and it was from a doctor and it who've got AF, you go, "Oh, wow." And we all was an animation explaining complete heart block. compare notes. And everybody's different. It's That was really, really helpful. I was worried I had comforting. Really good.” [Participant26] done something to cause this problem because leading up to it I had all these horrible headaches.” “I think the best kind of information is, the kind that [Participant 46] makes me feel like I'm not making my symptoms up. I enjoy chatting with people that have the same The theme, communicating with other patients (n=11; disease.” [Participant 33] 22.00%), related to information that not only provided answers, but helped participants feel comforted and less alone in their experience:

Table 6.2: Information that was helpful

Information that has been helpful Class 1/Class 2 Class 3/Class 4 Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Specific information on mechanisms of 4 26.67 8 22.86 6 28.57 6 20.69 12 24.00 disease and treatments (Medical/scientific) 2 13.33 9 25.71 4 19.05 7 24.14 11 22.00 Communicating with other patients 1 6.67 7 20.00 4 19.05 4 13.79 8 16.00 Being able to speak with a nurses Specific information about diet including 1 6.67 4 11.43 2 9.52 3 10.34 5 10.00 weight management

Information that has been helpful Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Specific information on mechanisms of 9 26.47 4 16.67 7 29.17 5 20.83 0 0.00 12 24.00 disease and treatments (Medical/scientific) Communicating with other patients 8 23.53 5 20.83 6 25.00 6 25.00 1 20.00 11 22.00 Being able to speak with a nurses 6 17.65 6 25.00 4 16.67 4 16.67 1 20.00 8 16.00 Specific information about diet including 3 8.82 3 12.50 1 4.17 3 12.50 1 20.00 5 10.00 weight management

100 Chronic Heart Failure 2017 Australian PEEK Study Section 6

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Figure 6.2: Information that was helpful (% of all participants)

Information that was not helpful issue for them, however I would like some honesty in that area, but that may not be professional prudent Participants were asked whether there was any for them. I think they're bound by protocols and information they had come across that was not legalities. I'm sure they're very aware of not saying helpful. The main theme in this section was that all anything which could lead to some action, which I've information is useful (n=16; 32.00%). Participants with never done, and wouldn't be.” [Participant 36] class I/Class II disease described this more frequently than the general cohort (46.67% compared to 32.00% “Yeah. Look, if I want to know anything, because I in the general cohort). Where participants noted that only see the cardiologist every 12 months, I mean, if I there was information that was not helpful, this fell think of something, I've normally forgotten by the into three main themes including the cardiologist time I've got to see him and he doesn't have time to generally not being helpful (n=12; 24.00%), answer my questions anyway.” [Participant 40] information that was not specific to chronic heart The participants that described not being able to failure (n=8; 16.00%) and information that was not access information that was age appropriate were age-appropriate (n=6; 12.00%). primarily those that were under 50 years of age. Participants that noted that their interaction with These participants noted that the information their cardiologist was not helpful, primarily spoke provided often assumed that people with heart failure about not receiving enough specific information about were only elderly people and did not address some of their condition or the feeling that there was not the issues that were important to them: enough time to ask for information during a “Sometimes what they'll talk about in hospital isn't consultation: helpful because it is more designed for older people. “All of the stuff that wasn't great. I guess And it's sort of, it's hard to get through to them, it's information from the specialist, the cardiologist "Wait a minute, you know I'm 30 years younger than didn't really get to the point of knowing how the these guys!" Things are different throughout my age treatment is going to affect you in the future. That's group and we have some information about that, something I would like to know. What other, what and of course I don't get that because it's not the the options are, what other things are available, and normal thing. Yeah, that makes it very hard.” what happens if you don't take the action that they [Participant 7] recommend. So, knowing what you could suffer in “Yes. Absolutely, because some of the stuff you read the future if you didn't take a particular course of is based on stats ... Most people who get heart action, or treatment.” [Participant 19] failure are in their 80s, and so prognosis for the heart “I think it's been less than what I would like. I don't failure from lots of the stats actually only suggests think it's been properly explained to me. I you've got seven years...... because I guess I was an understanding why doctors would be wary about outlier, it didn't actually tell me what my prognosis, saying why I might have got it, and that's all right. I and they just need to revise it because everything's mean, I understand professionally that that's an based on research. Past research. There's very little

101 Chronic Heart Failure 2017 Australian PEEK Study Section 6 research that happened in relation to heart failure two flights of stairs than you can resume normal because it's a bit of a dead-end story. People don't sexual activity. I'm never going to be able to climb wanna sink their money into it.” [Participant 48] two flights of stairs, so what does that mean for me? So there's that kind of thing and recovering from a “The Heart Foundation's book. You know the one heart attack. I haven't had a heart attack.” they give you, the Heart Foundation? That's all right [Participant 6] if you've had a heart attack. Even ... they've got like half a page on basically intimacy. If you can climb

Table 6.3: Information that was not helpful

Information that has not been Class 1/Class 2 Class 3/Class 4 Regional/Rural Metropolitan All participants n=50 helpful n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % All information is useful/Nothing not 7 46.67 9 25.71 6 28.57 10 34.48 16 32.00 helpful Participant describes cardiologist as not 5 33.33 7 20.00 4 19.05 8 27.59 12 24.00 being helpful Conflicting information/Lack of specific 1 6.67 7 20.00 3 14.29 5 17.24 8 16.00 information about Chronic Heart Failure and sub-types 1 6.67 5 14.29 2 9.52 4 13.79 6 12.00 Information that is not age appropriate

Information that has not been Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants helpful (n=34) (n=24) (n=24) (n=24) (n=5) n=50 n= % n= % n= % n= % n= % n= % All information is useful/Nothing not helpful 9 26.47 7 29.17 5 20.83 11 45.83 2 40.00 16 32.00 Participant describes cardiologist as not 9 26.47 6 25.00 7 29.17 7 29.17 2 40.00 12 24.00 being helpful Conflicting information/Lack of specific 6 17.65 4 16.67 5 20.83 2 8.33 1 20.00 8 16.00 information about Chronic Heart Failure and sub-types Information that is not age appropriate 4 11.76 4 16.67 5 20.83 2 8.33 0 0.00 6 12.00

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Figure 6.3: Information that was not helpful (% of all participants) Information preferences (Format of information) There was one variation between subgroups. Participants with class I/Class II described a Participants were asked whether they had a preference for talking to someone less frequently preference for information online, talking to than participants with class III/class IV disease and someone, in written (booklet) form or through a less frequently than the general cohort (20.00% phone App. Close to half of the participants (n=21; compared to 51.43% of class III/class IV participants 42.00%) described a preference for talking to and 42.00% in the genera cohort). someone. The second most common theme was accessing information online (n=10; 20.00%). There In relation to talking to someone, patients described were no participants that had a preference for phone the preference of talking to a health professional as it Apps. provided an opportunity to ask questions and clarify things with them:

102 Chronic Heart Failure 2017 Australian PEEK Study Section 6 “No, I would definitely prefer to talk to someone, ask the questions, or where they just explain.” because I can ask questions, and specifics around it, [Participant 23] then having to plough around a whole lot of “I'm very much a face to face person I think. I have a irrelevant stuff. Which results in more questions than low threshold for boredom when it comes to reading answers, very often. Because I don't have enough of a lot of words on a page. I like to read, I like to read a level of knowledge, and I'm not going to to get it.” murder mysteries, but I don't want to be in one of [Participant 10] them.” [Participant 45] “Definitely talking to someone, whether it be either or the phone or in a setting where you can actually

Table 6.4: Information preferences (Format)

Class 1/Class 2 Class 3/Class 4 Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Talking to someone (Provides clarity and 3 20.00 18 51.43 7 33.33 14 48.28 21 42.00 interpretation) Online (Ease) 3 20.00 7 20.00 6 28.57 4 13.79 10 20.00 No preference 4 26.67 5 14.29 3 14.29 6 20.69 9 18.00

Don't like apps 1 6.67 1 2.86 0 0.00 2 6.90 2 4.00 Phone apps 0 0.00 0 0.00 0 0.00 0 0.00 0 0.00

Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Talking to someone (Provides clarity and 16 47.06 10 41.67 11 45.83 8 33.33 2 40.00 21 42.00 interpretation) Online (Ease) 6 17.65 3 12.50 3 12.50 5 20.83 2 40.00 10 20.00 No preference 4 11.76 4 16.67 4 16.67 4 16.67 0 0.00 9 18.00 Don't like apps 1 2.94 1 4.17 1 4.17 1 4.17 0 0.00 2 4.00 Phone apps 0 0.00 0 0.00 0 0.00 0 0.00 0 0.00 0 0.00

45 40 35 30 25 20 15 10 5 0 Talking to someone Online (Ease) No preference (Provides clarity and interpretation)

Figure 6.4: Information preferences (Format) (% of all participants)

103 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Information preferences (Timing of information) didn't know anything. I was the most receptive about receiving any kind of information.” [Participant 33] Participants were asked to reflect on their experience and think about when they were most receptive to There were 14 participants (28.00%) that described receiving information, not when they actually being most receptive to information about a month or received the information, but when they felt they so after diagnosis, often following discharge from could take it all in. There two key themes identified hospital. These participants spoke about time to including at or close to diagnosis (n=18; 36.00%) and realise that they had a significant health issue before about a month or so after diagnosis, often following seeking more information: discharge from hospital (n=14; 28.00%). “That's a really good question. Once I got out of the There was one variation in relation to sub-groups. initial heart attack and came back out of cardio Participants with hypertension described being more rehab, then home, that's when I started to do my receptive to information following discharge/after a research. I said to myself I need to know my month or so more frequently than the general cohort condition. [IDENTIFIABLE INFORMATION REMOVED]. (45.83% compared to 28.00% in the general cohort). I was able to look at myself and say, okay what I am going through. What am I going to do to make sure The most common theme was at diagnosis (n=18; I'm going to get through this. What kind of research, 36.00%), where participants described wanting to what can I look at and I'm an information gatherer. know as much as possible so that they could I'll gather the information and so I was onto it fairly understand what was happening to them and to quickly.” [Participant 5] inform treatment decisions: “No, it took me a month at least, I think because I “I would have liked some info when I had been was so sick to start with it just took all my energy diagnosed and I think the Cardiologist could have sat just to get out of bed and sit on a chair, so I think there and talked to me about it. Not just flip by the probably or even a month, two months after that's bed as he did. And I think say once I started to get when I started to think "Well hang on, what is this better, after getting to the right tablets, I think then I've got and what happened?" And yeah start talking it would have been good to have had more to all the people around me about what happened information given to me.” [Participant 5] here and what happened there, but up till then I “Oh, as soon as I'd been told I had heart failure. know my daughter laughed, she said she sat there, Because when you're told something like that you ... and they thought it was a great joke they could tell Well, it's the Irish in me. You imagine and the same story to me everyday and I'd still laugh immediately think the worst, whereas if there was because I never remembered what was said to me information given to you at the time, you can refer the day before. It took a while yeah. So at least a back to it and process it at your own speed, but you month I'd say.” [Participant 15] know that there's light in the tunnel, sort of “When I was able to take information in. I really thing.”[Participant 20] think I didn't really take much of it in until I was out “That's tricky because I'm always receptive to of hospital, and a couple of months later, I think. You receiving information about it. I guess in the early think, "Oh, I'm better now." But then little things days I was absorbing more information because I happen, and you realise that it's something that didn't know a lot of stuff. I'm probably less receptive you've gotta live with maybe for the rest of your life. now because I feel like I know more. Probably on It was maybe a couple of months after first diagnosis I suppose that's when I'm the most diagnosed.” [Participant 42] receptive. The most receptive I suppose, because I

104 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Table 6.5: Information preferences (Timing)

Timing of information Class 1/Class 2 Class 3/Class 4 Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % At or close to diagnosis 4 26.67 14 40.00 7 33.33 11 37.93 18 36.00 Following discharge from hospital/clinical 4 26.67 10 28.57 7 33.33 7 24.14 14 28.00 setting/after about a month

Timing of information Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % At or close to diagnosis 13 38.24 6 25.00 6 25.00 6 25.00 2 40.00 18 36.00 Following discharge from hospital/clinical 9 26.47 9 37.50 7 29.17 11 45.83 2 40.00 14 28.00 setting/after about a month

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0 At or close to diagnosis Following discharge from hospital/clinical setting/after about a month

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

Communication with health professionals In relation to very good communication with their nurse (n=24; 48.00%), participants described valuing Participants were asked to describe the being able to access someone who could take the communication that they had had with health time to talk with them and be available when they professionals throughout their experience. The most had questions: common theme was that participants had very good communication with their nurse (n=24; 48.00%). “The very first nurse who was there was absolutely There were 15 participants (30.00%) that were brilliant, and she would come and sit with you every satisfied with the communication they had with time you'd go in there, sit and talk about what you're health professionals, while an additional 15 doing, tell you about your medications, friends at the participants (30.00%) described having difficulties in hospital so professional, she was terrific.” relation to communication with their cardiologist. [Participant 15] There were two variations in relation to sub-groups. “Can't fault it. If we've needed help or if we've Participants in regional/rural areas spoke about being needed someone to talk to, the heart failure nurses satisfied with communication less frequently than in CITY and in CITY at both the clinics have just been participants in metropolitan areas (19.05% compared exceptional. We know that we can phone them if to 37.93% in metropolitan areas) and also described they're not there straightaway. We get a phone call having difficult communication with their specialist a couple of hours later. We can tell them what's more frequently than participants in metropolitan going on. They'll tell us either to go to the GP or get areas (42.86% compared to 20.69% in metropolitan in the car and come up. From that point, we couldn't areas). fault it. They were great support.” [Participant 16]

105 Chronic Heart Failure 2017 Australian PEEK Study Section 6 “At the heart failure clinic, I don't know what her can be very, very dodgy like that. My cardiologist, I title is but I know she's a, she's a nurse but not, she, I can't really talk to much, if that makes sense? My GP wish I knew what her title was. But yeah there is one I do. I talk to her.” [Participant 7] nurse at the heart failure clinic I've quite a bit of “I'd start with the cardiologist pretty low, I was contact with. And anytime I need something, like for never really given any information about- from as I example, I wanted to join the gym and needed said the standard test results and so on, and even , I permission from them to join the gym, I spoke to her know I go into a session with a whole lot of and she gave me advice and sorted out everything questions, and you don't get a lot of data and for me.” [Participant 32] answers, almost like they expect that you know In contrast, where communication was not positive what's going on and why are you wasting your and participants described having difficulties in time.” [Participant 15] relation to communication with their cardiologist, this “The nurses have been very helpful, very good with it was primarily in relation to conversations not being all. Doctors just run, pretty run of the mill practice. personalised and/or not being approachable: They don't care. I feel up in the air whether I'm going “Doctors will talk over me, as though, you know, I'm to see my cardiologist in January with his attitude totally stupid. And I can't, don't want to name any and the rest of it.” [Participant 31] names, and I don't want to do that, but the doctors

Table 6.6: Communication with health professionals

Communication with health Class 1/Class 2 Class 3/Class 4 Regional/Rural Metropolitan All participants n=50 professionals n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= %

Participant describes good communication 6 40.00 18 51.43 10 47.62 14 48.28 24 48.00 with their cardiac nurse specialist Participant describes being satisfied with 6 40.00 9 25.71 4 19.05 11 37.93 15 30.00 communication (Very good/excellent) Participant describes limited or difficult 6 40.00 9 25.71 9 42.86 6 20.69 15 30.00 communication with their specialist Participant describes communication 1 6.67 10 28.57 5 23.81 6 20.69 11 22.00 overall good/some complaints with personalities or single events Participant describes good communication 1 6.67 4 11.43 3 14.29 2 6.90 5 10.00 with their General Practitioner 2 13.33 3 8.57 3 14.29 2 6.90 5 10.00 Participant describes poor communication

Communication with health Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants professionals (n=34) (n=24) (n=24) (n=24) (n=5) n=50 n= % n= % n= % n= % n= % n= % Participant describes good communication 15 44.12 11 45.83 12 50.00 10 41.67 1 20.00 24 48.00 with their cardiac nurse specialist Participant describes being satisfied with 11 32.35 7 29.17 7 29.17 10 41.67 3 60.00 15 30.00 communication (Very good/excellent) Participant describes limited or difficult 9 26.47 10 41.67 6 25.00 7 29.17 1 20.00 15 30.00 communication with their specialist Participant describes communication overall 8 23.53 5 20.83 6 25.00 4 16.67 0 0.00 11 22.00 good/some complaints with personalities or single events 0 Participant describes good communication 3 8.82 2 8.33 2 8.33 3 12.50 0.00 5 10.00 with their General Practitioner Participant describes poor communication 3 8.82 1 4.17 4 16.67 1 4.17 1 20.00 5 10.00

106 Chronic Heart Failure 2017 Australian PEEK Study Section 6

60

50

40

30

20

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0 Participant Participant Participant Participant Participant Participant describes good describes being describes limited describes describes good describes poor communication satisfied with or difficult communication communication communication with their cardiac communication communication overall with their General nurse (Very with their good/some Practitioner good/excellent) specialist complaints with personalities or single events

Figure 6. 6: Communication with health professionals (% of all participants)

As a follow-up question, participants were asked who they talked to about their condition. Over half of all participants (n=28; 56.00%) described talking with their General Practitioner, followed by 21 (n=42.00%) who described speaking with their cardiologist.

Table 6.7: Who patients talk to

Who patients talk to about Class 1/Class 2 Class 3/Class 4 Regional/Rural Metropolitan All participants n=50 treatment n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % 9 60.00 19 54.29 9 42.86 19 65.52 28 56.00 GP 6 40.00 15 42.86 8 38.10 13 44.83 21 42.00 Specialist (Cardiologist)

Who patients talk to about Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants treatment (n=34) (n=24) (n=24) (n=24) (n=5) n=50 n= % n= % n= % n= % n= % n= % GP 18 52.94 11 45.83 9 37.50 14 58.33 2 40.00 28 56.00 Specialist (Cardiologist) 14 41.18 8 33.33 14 58.33 8 33.33 1 20.00 21 42.00

107 Chronic Heart Failure 2017 Australian PEEK Study Section 6

60

50

40

30

20

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0 GP Specialist (Cardiologist)

Figure 6.7: Who patients talk to (% of all participants)

Respect shown coming around. That's why my husband comes with me.” [Participant 13] While previous questions were asked about access to information and experience with communication, the “Respectfully ... Well, they've never been final question in this series was in relation to respect. disrespectful to me. It's just that I think the fact that Participants were asked whether they felt as though the last time I was hospitalised, I mean, the hospital they had been treated respectfully throughout their was bulging at the same with all these influenza experience in the health system. The majority of cases, and I think the staff was rushed off their feet. participants responded that they felt they had been They didn't know whether they were coming or treated respectfully (n=32; 64.00%), while 17 going, but having said that, the people who should participants (34.00%) described being treated have known better didn't do it. But I mean, genuinely respectfully most of the time. speaking, I would never downplay the role that the nursing and ancillary staff have done at the hospital. Participants that noted that they had not always been I can accept that they are just so rushed, but no, the treated respectfully (n=17; 34.00%) spoke about being respect was always there from them. Not so much treated respectfully for the most part, however they from the physician, though.” [Participant 20] described single incidents or issues with particular health professionals “By the cardiac nurse, yes, of course. But I'm not to impressed with the cardiologist but then I just think “Yes. I would say yeah, I have. Yeah. I'm probably a that there's a lot of specialists that are a bit like that bit scared with [the cardiologist] because ... I've been anyway, so I know that they're busy and probably a going to him for a few years now and he's scary. It's billion patients, but I don't feel that I can sort of have hard to explain. I got warned about him prior to me an in depth talk with them like I could do with my seeing him, so I knew what to expect. He started doctor or with the cardiac nurse.” [Participant 47] Table 6.8: Respect shown to patients

Respect shown to patients Class 1/Class 2 Class 3/Class 4 Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes being treated 9 60.00 23 65.71 14 66.67 18 62.07 32 64.00 respectfully throughout their experience Participant describes being treated 5 33.33 12 34.29 7 33.33 10 34.48 17 34.00 respectfully, most of the time Participant describes not being treated 0 0.00 1 2.86 0 0.00 0 0.00 1 2.00 respectfully

108 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Respect shown to patients Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes being treated 21 61.76 15 62.50 15 62.50 16 66.67 3 60.00 32 64.00 respectfully throughout their experience Participant describes being treated 13 38.24 8 33.33 9 37.50 7 29.17 2 40.00 17 34.00 respectfully, most of the time Participant describes not being treated 1 2.94 1 4.17 0 0.00 0 0.00 0 0.00 1 2.00 respectfully

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0 Participant describes being treated Participant describes being treated Participant describes not being treated respectfully throughout their respectfully, most of the time respectfully experience

Figure 6.8: Respect shown to patients (% of all participants)

Knowledge and confidence Box plots display each of the Partners in Health sub- scales by CHF Class, location of participants, sleep The Partners in Health questionnaire (PIH) measures problem status, arthritis status, arrhythmia status, an individual’s knowledge and confidence for hypertension status, and hyperkalemia status (Figures managing their own health. The Partners in Health 6.9 -6.43) comprises a global score, 4 sub scales; knowledge, treatment, symptoms and coping. A higher score Comparisons of PIH global and sub scales have been denotes a better knowledge and understanding. made based on CHF Class (Figures 6.9 to 6.13, Tables Overall, the participants had a median score in the top 6.10 and 6.11), location (Figures 6.14 to 6.18, Tables quintile for knowledge (Mdn=26.00, IQR =8.75), 6.12 and 6.13), sleep problems (Figures 6.19 to 6.23, adherence to treatment (Mdn=16.00, IQR = 2.00), and Tables 6.14 and 6.15), arthritis status (Figures 6.24 to management of symptoms (Mdn=21.00, IQR = 5.00) 6.28, Table 6.16), arrhythmia status (Figures 6.29 to indicating very good outcomes; the overall median 6.33, Tables 6.17), hypertension status (Figures 6.34 score for coping (Mdn=15.5, IQR = 8.75) and the total to 6.38, Table 6.18), and hyperkalemia status (Figures score (Mdn=21.00, IQR = 5.00) fell into the second 6.439 to 6.43, Table 6.19). highest quintile, indicating a good knowledge and understanding (Table 6.9).

109 Chronic Heart Failure 2017 Australian PEEK Study Section 6 Table 6.9: Summary statistics all participants Partners in Health

Scale Median* IQR Possible range

Knowledge 26.00 8.75 0-32

Adherence to treatment 16.00 2.00 0-16

Management of symptoms 21.00 5.00 0-24

Coping 15.50 8.75 0-24

Total score 76.00 21.75 0-96

*Median and IQR used for all scales none have a normal distribution

Comparisons of PIH sub scales by CHF Class A two-sample t-test indicated a significant difference in the PIH Coping subscale between participants with Comparisons of PIH subscales were made by CHF class Class I and II (M=19.07, SD=4.17) and those with Class I/Class II, and class III/Class IV. A two-sample t-test III and IV (M=14.69, SD=6.24), t(48) = 2.48, p=0.0166 was used when assumptions for normality and (Table 6.10). No other statistically significant variance were met (Table 6.10), or when assumptions differences were observed (Tables 6.9 -6.11). for normality and variance were not met, a Wilcoxon rank sum test with continuity correction was used (Table 6.11).

Partners in Health - Knowledge Partners in Health -Adherence to Treatment 16 30 14 25 20 12 15 10 10 8 5

Class I and II Class III and IV Class I and II Class III and IV

Figure 6.9: Boxplot of PIH knowledge by CHF class Figure 6.10: Boxplot of PIH adherence to treatment by CHF class

110 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Partners in Health -Management of Symptoms Partners in Health -Coping 24 22 20 20 15 18 10 16 14 5 12

Class I and II Class III and IV Class I and II Class III and IV

Figure 6.11: Boxplot of PIH management of symptoms Figure 6.12: Boxplot of PIH coping by CHF class by CHF class

Partners in Health -Total Score 90 80 70 60 50 40

Class I and II Class III and IV

Figure 6.13: Boxplot of PIH total score by CHF class

111 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Table 6.10: Summary statistics and two sample t-test PIH subscales by Class of Disease PIH subscale Group Count Mean SD t df P Coping Class I and II 15 19.07 4.17 2.48 48 0.0166* Class III and IV 35 14.69 6.24 *Statistically significant at p<0.05

Table 6.11: Summary statistics Wilcoxon rank sum test with continuity correction PIH subscales by Class of Disease PIH subscale Group Count Median IQR W P Knowledge Class I and II 15 27.00 2.50 295.50 0.4878 Class III and IV 35 26.00 10.00 Adherence to treatment Class I and II 15 16.00 1.50 316.50 0.2204 Class III and IV 35 15.00 4.00 Management of Class I and II 15 23.00 4.00 337.50 0.1111 symptoms Class III and IV 35 20.00 5.50 Total score Class I and II 15 85.00 15.50 348.50 0.0700 Class III and IV 35 75.00 21.50

112 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Comparisons of PIH sub scales by location correction indicated that the partners in Health – adherence to treatment median score was higher for Comparisons of PIH subscales were made between those that live in major cities (Mdn = 16.00, IQR=1.00) those that live in a major city compared with those compared to those that live in regional areas (Mdn = that live in regional areas. A two-sample t-test was 14.00, IQR = 4.00), W = 406.50, p= 0.0309, indicating used when assumptions for normality and variance that those that live in major cities adhere to were met (Table 6.12), or when assumptions for treatment better than those in regional areas (Table normality and variance were not met, a Wilcoxon rank 6.12). sum test with continuity correction was used (Table 6.13). A Wilcoxon rank sum test with continuity

Partners in Health -Knowledge Partners in Health - Adherence to Treatment 16 30 14 25 20 12 15 10 10 8 5

Major city Regional areas Major city Regional areas

Figure 6.14: Boxplot of PIH knowledge by location Figure 6.15: Boxplot of PIH adherence to treatment by location

Partners in Health - Management of Symptoms Partners in Health - Coping 24 22 20 20 15 18 10 16 14 5 12

Major city Regional areas Major city Regional areas

Figure 6.16: Boxplot of PIH management of symptoms Figure 6.17: Boxplot of PIH coping by location by location

113 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Partners in Health - Total Score 90 80 70 60 50 40

Major city Regional areas

Figure 6.18: Boxplot of PIH total score by location

Table 6.12: Summary statistics and two sample t-test PIH subscales by location PIH subscale Group Count Mean SD t df P Coping Major City 29 16.41 5.55 0.57 48 0.5726 Regional/Remote 21 15.43 6.70

Table 6.13: Summary statistics Wilcoxon rank sum test with continuity correction PIH subscales by location PIH subscale Group Count Median IQR W P Knowledge Major City 29 27.00 6.00 371.00 0.1908 Regional/Remote 21 25.00 9.00 Adherence to treatment Major City 29 16.00 1.00 406.50 0.0309* Regional/Remote 21 14.00 4.00 Management of Major City 29 18.00 8.00 343.50 0.4446 symptoms Regional/Remote 21 15.00 10.00 Total Score Major City 29 84.00 20.00 354.50 0.3300 Regional/Remote 21 71.00 20.00 * Statistically significant at p<0.05

114 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Comparisons of PIH sub scales by sleep problem when assumptions for normality and variance were status not met, a Wilcoxon rank sum test with continuity correction was used (Table 6.15). No statistically Comparisons of PIH sub scales were made between significant differences were observed between these participants with and without sleep problems. A two- two groups for any PIH sub scale (Tables 6.14 and sample t-test was used when assumptions for 6.15). normality and variance were met (Table 6.14), or

Partners in Health - Knowledge Partners in Health - Adherence to Treatment 16 30 14 25 20 12 15 10 10 8 5

No sleep problems Sleep problems No sleep problems Sleep problems

Figure 6.19: Boxplot of PIH knowledge by sleep Figure 6.20: Boxplot of PIH adherence to treatment by problem status sleep problem status

Partners in Health - Management of Symptoms Partners in Health - Coping 24 22 20 20 15 18 10 16 14 5 12

No sleep problems Sleep problems No sleep problems Sleep problems

Figure 6.21: Boxplot of PIH symptoms by sleep problem Figure 6.22: Boxplot of PIH coping by sleep problem status status

115 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Partners in Health - Total Score 90 80 70 60 50 40

No sleep problems Sleep problems

Figure 6.23: Boxplot of PIH total score by sleep problem status

Table 6.14: Summary statistics and two sample t-test PIH subscales by sleep problem status PIH subscale Group Count Mean SD t df P Coping No sleep problems 16 17.44 6.31 1.16 48 0.2500 Sleep problems 34 15.32 5.83 Total Score No sleep problems 16 80.50 12.79 1.39 48 0.1711 Sleep problems 34 74.47 14.95

Table 6.15: Summary statistics Wilcoxon rank sum test with continuity correction PIH subscales by sleep problem status PIH subscale Group Count Median IQR W P Knowledge No sleep problems 16 26.00 7.00 311.00 0.4194 Sleep problems 34 26.00 9.75 Adherence to treatment No sleep problems 16 16.00 1.25 352.00 0.0736 Sleep problems 34 15.00 4.00 Management of No sleep problems 16 22.00 5.00 329.50 0.2311 symptoms Sleep problems 34 21.00 4.75

116 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Comparisons of PIH sub scales by arthritis status without arthritis (Mdn = 19.50, IQR = 5.00), W = 171.00, p= 0.0058, the median coping subscale was Comparisons of PIH sub scales were made between higher for those with arthritis (Mdn =20.00, IQR participants with and without arthritis. Assumptions =8.25) compared to those without arthritis (Mdn = for normality and variance were not met, a Wilcoxon 12.00, IQR – 9.00) W = 171.00, p= 0.0062, and those rank sum test with continuity correction was used with arthritis had a higher median total score (Mdn = (Table 6.16). 85.00, IQR = 17.75) compared to those without A Wilcoxon rank sum test with continuity correction arthritis (Mdn = 69.00, IQR = 16.75) W = 170.50, p = indicated that the partners in Health – management 0.0061 (Table 6.16). This indicates that those with of symptoms median score was higher for those with arthritis have a better management of systems, arthritis (Mdn = 22.00, IQR=3.50) compared to those coping and total score.

Partners in Health - Knowledge Partners in Health - Adherence to Treatment 16 30 14 25 20 12 15 10 10 8 5

No arthritis Arthritis No arthritis Arthritis

Figure 6.24: Boxplot of PIH knowledge by arthritis Figure 6.25: Boxplot of PIH adherence to treatment by status arthritis status

Partners in Health - Managment of Symptoms Partners in Health - Coping 24 22 20 20 15 18 10 16 14 5 12

No arthritis Arthritis No arthritis Arthritis

Figure 6.26: Boxplot of PIH symptoms by arthritis status Figure 6.27: Boxplot of PIH coping by arthritis status

117 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Partners in Health - Total Score 90 80 70 60 50 40

No arthritis Arthritis

Figure 6.28: Boxplot of PIH total score by arthritis status

Table 6.16: Summary statistics Wilcoxon rank sum test with continuity correction PIH subscales by arthritis status PIH subscale Group Count Median IQR W P Knowledge No arthritis 26 25.00 4.75 225.50 0.0922 Arthritis 24 28.00 8.00 Adherence to treatment No arthritis 26 15.00 2.00 287.00 0.6067 Arthritis 24 16.00 4.00 Management of No arthritis 26 19.50 5.00 171.00 0.00 symptoms Arthritis 24 22.50 3.50 58* Coping No arthritis 26 12.00 9.00 171.00 0.0062* Arthritis 24 20.00 8.25 Total score No arthritis 26 69.00 16.75 170.50 0.0061* Arthritis 24 85.00 17.75 *Statistically significant at p<0.05

118 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Comparisons of PIH sub scales by arrhythmia status met, a Wilcoxon rank sum test with continuity correction was used (Table 6.17). No statistically Comparisons of PIH sub scales were made between significant differences were observed between these participants with and without sleep problems. two groups for any PIH sub scale (Table 6.17) Assumptions for normality and variance were not

Partners in Health - Knowledge Partners in Health - Adherence to Treatment 16 30 14 25 20 12 15 10 10 8 5

No arrhythmia Arrhythmia No arrhythmia Arrhythmia

Figure 6.29: Boxplot of PIH knowledge by arrhythmia Figure 6.30: Boxplot of PIH adherence to treatment by status arrhythmia status

Partners in Health - Management of Symptoms Partners in Health - Coping 24 22 20 20 15 18 10 16 14 5 12

No arrhythmia Arrhythmia No arrhythmia Arrhythmia

Figure 6.31: Boxplot of PIH management of symptoms Figure 6.32: Boxplot of PIH coping by arrhythmia status by arrhythmia status

119 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Partners in Health - Total Score 90 80 70 60 50 40

No arrhythmia Arrhythmia

Figure 6.33: Boxplot of PIH total score by arrhythmia status

Table 6.17: Summary statistics Wilcoxon rank sum test with continuity correction PIH subscales by arrhythmia status PIH subscale Group Count Median IQR W p Knowledge No arrhythmia 26 26.00 8.50 264.50 0.3574 Arrhythmia 24 26.00 7.50 Adherence to treatment No arrhythmia 26 26.00 15.50 269.00 0.3718 Arrhythmia 24 24.00 16.00 Management of No arrhythmia 26 21.00 3.75 347.50 0.4923 symptoms Arrhythmia 24 20.00 5.75 Coping No arrhythmia 26 19.50 10.50 389.00 0.1360 Arrhythmia 24 14.00 7.50 Total score No arrhythmia 26 80.50 21.00 330.00 0.7337 Arrhythmia 24 74.50 19.25

120 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Comparisons of PIH sub scales by hypertension IQR=8.25) and those without hypertension status (Mdn=12.00, IQR=9.50), W = 209.00, p=0.0458 (Table 6.18). A Wilcoxon rank sum test with continuity Comparisons of PIH subscales were made between indicated a significant difference in the PIH total score those that with hypertension compared to without. subscale between participants with hypertension Assumptions for normality and variance were not (Mdn=83.50, IQR=15.50) and those without met, a Wilcoxon rank sum test with continuity hypertension (Mdn=68.50, IQR=23.00), W = 210.50, correction was used (Table 6.18). p=0.0496 (Table 6.18). This suggests that those with A Wilcoxon rank sum test with continuity indicated a hypertension were better able to cope and had significant difference in the PIH Coping subscale greater knowledge and confidence for managing their between participants with hypertension (Mdn=19.50, own health.

Partners in Health - Knowledge Partners in Health - Adherence to Treatment 16 30 14 25 20 12 15 10 10 8 5

No hypertension Hypertension No hypertension Hypertension

Figure 6.34: Boxplot of PIH knowledge by hypertension Figure 6.35: Boxplot of PIH adherence to treatment by status hypertension status

Partners in Health - Management of Symptoms Partners in Health - Coping 24 22 20 20 15 18 10 16 14 5 12

No hypertension Hypertension No hypertension Hypertension

Figure 6.36: Boxplot of PIH management of symptoms Figure 6.37: Boxplot of PIH coping by hypertension status by hypertension status

121 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Partners in Health - Total Score 90 80 70 60 50 40

No hypertension Hypertension

Figure 6.38: Boxplot of PIH total score by hypertension status

Table 6.18: Summary statistics Wilcoxon rank sum test with continuity correction PIH subscales by hypertension status PIH subscale Group Count Median IQR W P Knowledge No hypertension 26 25.00 6.00 224.50 0.0885 Hypertension 24 28.00 6.00 Adherence to treatment No hypertension 26 15.50 2.00 301.00 0.8254 Hypertension 24 16.00 4.00 Management of No hypertension 26 19.50 7.75 241.50 0.1697 symptoms Hypertension 24 21.50 3.25 Coping No hypertension 26 12.00 9.50 209.00 0.0458* Hypertension 24 19.50 8.25 Total score No hypertension 26 68.50 23.00 210.50 0.0496* Hypertension 24 83.50 15.50 *Statistically significant at p<0.05

122 Chronic Heart Failure 2017 Australian PEEK Study Section 6 Comparisons of PIH sub scales by hyperkalaemia met, a Wilcoxon rank sum test with continuity status correction was used (Table 6.19). No statistically significant differences were observed between these Comparisons of PIH subscales were made between two groups for any PIH sub scale (Table 6.19). those that with hyperkalaemia compared without. Assumptions for normality and variance were not

Partners in Health - Knowledge Partners in Health - Adherence to Treatment 16 30 14 25 20 12 15 10 10 8 5

No hyperkalaemia Hyperkalaemia No hyperkalaemia Hyperkalaemia

Figure 6.39: Boxplot of PIH knowledge by Figure 6.40: Boxplot of PIH adherence to treatment by hyperkalaemia status hyperkalaemia status

Partners in Health - Management of Symptoms Partners in Health - Coping 24 22 20 20 15 18 10 16 14 5 12

No hyperkalaemia Hyperkalaemia No hyperkalaemia Hyperkalaemia

Figure 6.41: Boxplot of PIH management of symptoms Figure 6.42: Boxplot of PIH coping by hyperkalaemia by hyperkalaemia status status

123 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Partners in Health - Total Score 90 80 70 60 50 40

No hyperkalaemia Hyperkalaemia

Figure 6.43: Boxplot of PIH total score by hyperkalaemia status

Table 6.19: Summary statistics Wilcoxon rank sum test with continuity correction PIH subscales by hyperkalaemia status PIH subscale Group Count Median IQR W p Knowledge No hyperkalaemia 45 26.00 8.00 95.00 0.5793 Hyperkalaemia 5 31.00 8.00 Adherence to treatment No hyperkalaemia 45 16.00 2.00 115.00 0.9442 Hyperkalaemia 5 16.00 4.00 Management of No hyperkalaemia 45 21.00 5.00 88.00 0.4330 symptoms Hyperkalaemia 5 24.00 6.00 Coping No hyperkalaemia 45 15.00 9.00 103.50 0.7827 Hyperkalaemia 5 19.00 6.00 Total score No hyperkalaemia 45 76.00 21.00 92.00 0.5173 Hyperkalaemia 5 85.00 19.00

124 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Information given by healthcare professionals and complementary therapies (20.00%) were least searched for independently. searched for (Figure 6.45). Participants were asked about what type of Information given to participants by was similar for all information they were given by healthcare classes, there was a notable difference in information professionals and what type of information they about disease cause, which was given approximately searched for independently. Information about half as often to NYHA class I and II (26.67%) compared disease management (64.00%), treatment options to NHYA classes III and IV (54.29%) (Figure 6.46). (56.00%) and dietary information (54.00%) were most Information searched for by participants by NHYA frequently given to participants by healthcare class was similar for all classes, the largest difference professionals, and information about complementary in information searched for was for treatment therapies (6.00%), how to interpret test results options, more participants with class I and II searched (12.00%) and clinical trials (16.00%) were give least for treatment options (73.33%) compared to class II often (Figure 6.44). Information about disease cause and IV ( 17.14%) (Figure 6.47). Information given and (48.00%), disease management (46.00%), and diet searched for independently was generally similar for (44.00%) were most often searched for independently those in a regional or remote area compared and for by participants, and clinical trials (10.00%) and those that live in a major city (Figures 6.48 and 6.49).

Information given by healthcare professionals and searched for independently.

Hereditary considera8ons genes or Hereditary considera7ons genes or Psychological/social support Psychological/social support Physical ac8vity Physical ac7vity Dietary informa8on Dietary informa7on How to interpret test results How to interpret test results Clinical trials Clinical trials Complementary therapies Complementary therapies Disease management Disease management Treatment op8ons Treatment op7ons Disease cause Disease cause

0 10 20 30 40 50 60 70 0 10 20 30 40 50 60

Figure 6.44: Information given by healthcare Figure 6.45: Information searched for independently professionals

Hereditary considera8ons genes or Hereditary considera9ons genes or Psychological/social support Psychological/social support Physical ac8vity Physical ac9vity Dietary informa8on Dietary informa9on How to interpret test results How to interpret test results Clinical trials Clinical trials Complementary therapies Complementary therapies Disease management Disease management Treatment op8ons Treatment op9ons Disease cause Disease cause 0 10 20 30 40 50 60 70 0 10 20 30 40 50 60 70 80

NHYA III and IV NHYA I and II NHYA III and IV NHYA I and II

Figure 6.46: Information given by healthcare Figure 6.47: Information searched for independently by professionals by class class

125 Chronic Heart Failure 2017 Australian PEEK Study Section 6

Hereditary considera9ons genes or Hereditary considera7ons genes or Psychological/social support Psychological/social support Physical ac9vity Physical ac7vity Dietary informa9on Dietary informa7on How to interpret test results How to interpret test results Clinical trials Clinical trials Complementary therapies Complementary therapies Disease management Disease management Treatment op9ons Treatment op7ons Disease cause Disease cause 0 10 20 30 40 50 60 70 80 0 10 20 30 40 50 60

Regional area Major City Regional area Major City

Figure 6.48: Information given by healthcare Figure 6.49: Information searched for independently by professionals by location location

The largest gaps in information, where information was neither given to patients nor searched for independently were for clinical trials (78.00%), complementary therapies (74.00%), and hereditary considerations (66.00%) (65.71%) (Figure 6.51). Participants were given most information either from healthcare professionals or independently for disease management (78.00%) dietary information (74.00%) and physical activity (74.00%) (Figure 6.50).

Hereditary/genes/genomic biomarker

Psychological/social support

Physical ac;vity

Dietary informa;on

How to interpret test results

Clinical trials

Complementary therapies

Disease management

Treatment op;ons

Disease cause

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Informa;on given NOT searched Informa;on given AND search Searched only NOT given OR searched

Figure 6.50: Information given by healthcare professionals and searched for independently

126 Chronic Heart Failure 2017 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 the most trusted, followed by not for profit or source that they most trusted, where 1 is the most charitable organisations (Figure 6.51). The most trusted and 4 is the least trusted. A weighted average trusted information sources were similar by NYHA is presented in Figure 6.51. With a weighted ranking, class and by location (Figures 6.52 and 6.53) the higher the score, the more trusted the source of

4 4.5

3.5 4 3.5 3 3 2.5 2.5 2 2 1.5 1.5 1 1 0.5 0.5 0 Non profit/Charity Government Pharmaceutical Hospital/Clinic 0 companies Non profit/Charity Government Pharmaceutical Hospital/Clinic companies NYHA class I and II NYHA class III and IV Figure 6.51: Most trusted information sources Figure 6.52: Most trusted information sources by CHF (weighted rank) class (weighted rank)

4.5 4 3.5 3 2.5 2 1.5 1 0.5 0 Non profit/Charity Government Pharmaceutical Hospital/Clinic companies

NYHA class I and II NYHA class III and IV Figure 6.53: Most trusted information sources by location (weighted rank)

127 Chronic Heart Failure 2017 Australian PEEK Study Section 7 Section 7 Care and support

Chronic Heart Failure 2017 Australian PEEK Study Section 7

Section 7: Experience of care and support

Summary Coordination of care • Overall the entire cohort had a mean communication score of 40.04, and a total score of 66.38; these scores fall in the middle of the scale. The mean score for navigation was 26.34, and the median scores for Care co- ordination was 7.50, and the median score for care received was 8.00; these scores fall in the second highest quintiles indicating good care coordination and care received. • Participants from metropolitan areas experienced significantly better care compared to those that live in regional areas. • Participants with arrhythmia were better able to navigate care than those without arrhythmias.

Care and support

• The majority of participants described care and support coming from family and friends (n=29; 58.00%), and this was the most common theme followed by care and support accessed from the hospital setting (n=26; 52.00%) and from other patients (n=10; 20.00%). • Participants with class I/Class II disease described support from the hospital setting less frequently than participants with class III/class IV (40.00% compared to 57.14% for class III/class IV). Participants in regional/rural areas also described this less frequently than participants in metropolitan areas (42.86% compared to 58.62% in metropolitan areas.)

129 Chronic Heart Failure 2017 Australian PEEK Study Section 7 Experience of coordination of care highest quintiles indicating good care coordination and care received. A Care Coordination questionnaire was completed. The Care Coordination questionnaire comprises a Box plots display each of the Care Coordination scores total score, 2 sub scales (communication and by NYHA class, location of participants, sleep problem navigation), and a single question for each relating to status, arthritis status, arrhythmia status, care-coordination and care received. A higher score hypertension status, and hyperkalemia status (Figures denotes better care outcome. Summary statistics for 7.1 to 7.35). the entire cohort are displayed alongside the possible Comparisons of Care Coordination scores have been range of each scale in Table 7.1. Overall the entire made based on NYHA class (Figures 7.1 to 7.5, Tables cohort had a mean communication score of 40.04, 7.2 and 7.3), location (Figures 7.6 to 7.10, Table 7.4), and a total score of 66.38; these scores fall in the sleep problem status (Figures 7.11 to 7.15, Tables 7.5 middle of the scale. The mean score for navigation and 7.6), arthritis status (Figures 7.16 to 7.20, Tables was 26.34, and the median scores for Care co- 7.7 and 7.8), arrhythmia status (Figures 7.21 to 7.25, ordination was 7.50, and the median score for care Tables 7.9 and7.10), hypertension status (Figures 7.26 received was 8.00; these scores fall in the second to 7.30, Tables 7.11 and 7.12) and hyperkalemia status (Figures 7.31 to 7.35, Table 7.13).

Table 7.1: Summary statistics Total score - Communication and Navigation

Scale Mean SD Median IQR Possible range

Total score* 66.38 13.97 69.50 20.00 20-100

Communication* 40.04 10.59 43.00 13.75 13- 65

Navigation* 26.34 5.21 27.00 5.75 7-35

Care co-ordination 6.70 2.64 7.50 3.75 1-10

Care received 7.60 2.36 8.00 2.00 1-10

*Normal distribution, use mean and sd as central measure

Comparisons of Care Coordination scores by NYHA assumptions for normality and variance were not met, class a Wilcoxon rank sum test with continuity correction was used (Table 7.3). No statistically significant Comparisons of Care Coordination scores were made differences were observed between these two groups by NYHA classes I and II and classes II and IV. A two- for any Care Coordination scores (Tables 7.2 and 7.3). sample t-test was used when assumptions for normality and variance were met (Table 7.2), or when

130 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Care Co-ordination - Total Score Care Co-ordination - Communication 60 90 80 50 70 40 60 50 30 40 20 30

Class I and II Class III and IV Class I and II Class III and IV

Figure 7.1: Boxplot of Care coordination total score Figure 7.2: Boxplot of Communication sub scale

Care Co-ordination - Navigation Care Co-ordination - Co-ordination of Care 35 10 8 30 6 25 4 20 2 15

Class I and II Class III and IV Class I and II Class III and IV

Figure 7.3: Boxplot of Navigation sub scale Figure 7.4: Boxplot of Care coordination question

131 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Care Co-ordination - Care Received 10 8 6 4 2

Class I and II Class III and IV

Figure 7.5: Boxplot of Care received

Table 7.2: Summary statistics and Two sample t test by disease class Care Group Number Mean SD T df P Coordination Care Class I and II 15 67.73 12.14 0.44 48 0.6584 coordination Total Score

Class III and IV 35 65.80 14.81 Communication Class I and II 15 40.27 7.99 0.10 48 0.9223 Class III and IV 35 39.94 11.63 Navigation Class I and II 15 27.47 5.62 1.00 48 0.3220 Class III and IV 35 25.86 5.04

Table 7.3: Summary statistics Wilcoxon rank sum test with continuity correction by disease class Care Coordination Group Numb Median IQR W P er Care coordination Class I and II 15 8.00 2.00 329.50 0.1541 Question Class III and IV 35 7.00 4.00 Care received Class I and II 15 9.00 1.00 320.00 0.2147 Class III and IV 35 8.00 2.50

Assumptions for normality and variance were not met, a Wilcoxon rank sum test with continuity Comparisons of Care Coordination scores by location correction was used (Table 7.4). Participants that live Comparisons of Care Coordination scores were made in major cities experienced significantly better care between those that live in a major city compared with compared to those that live in regional areas, W= those that live in regional or remote areas. 407.5, p=0.0383 (Tables 7.4).

132 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Care Co-ordination - Total Score Care Co-ordination - Communication 60 90 80 50 70 40 60 50 30 40 20 30

Major city Regional area Major city Regional area

Figure 7.6: Boxplot of Care coordination total score 7.7: Boxplot of Care coordination Communication

Care Co-ordination - Navigation Care Co-ordination - Co-ordination of Care 35 10 8 30 6 25 4 20 2 15

Major city Regional area Major city Regional area

Figure 7.8: Boxplot of Care coordination Navigation Figure 7.9: Boxplot of Care coordination question

133 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Care Co-ordination - Care Received 10 8 6 4 2

Major city Regional area

Figure 7.10: Boxplot of Care Received

Table 7.4: Summary statistics Wilcoxon rank sum test with continuity correction by location Care Coordination Group Numb Median IQR W P er Total score Major City 29 70.00 22.00 368.50 0.2117 Regional/Remote 21 69.00 27.00 Communication Major City 29 38.00 14.00 331.00 0.6089 Regional/Remote 21 44.00 20.00 Navigation Major City 29 27.00 11.00 382.00 0.1273 Regional/Remote 21 26.00 4.00 Care coordination Major City 29 8.00 3.00 357.50 0.2961 Question Regional/Remote 21 7.00 4.00 Care received Major City 29 8.00 2.00 407.50 0.0383* Regional/Remote 21 8.00 2.00 *Statistically significant at p<0.05

134 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Comparisons of Care Coordination scores by sleep (Table 7.5), or when assumptions for normality and problem status variance were not met, a Wilcoxon rank sum test with continuity correction was used (Table 7.6). No Comparisons of Care Coordination scores were made statistically significant differences were observed between participants with and without sleep between these two groups for any Care Coordination problems. A two-sample t-test was used when scores (Tables 7.5 and 7.6). assumptions for normality and variance were met

Care Co-ordination - Total Score Care Co-ordination - Communication 60 90 80 50 70 40 60 50 30 40 20 30

No sleep problems Sleep problems No sleep problems Sleep problems

Figure 7.11: Boxplot of Care coordination total score 7.12: Boxplot of Care coordination Communication

Care Co-ordination - Navigation Care Co-ordination - Co-ordination of Care 35 10 8 30 6 25 4 20 2 15

No sleep problems Sleep problems No sleep problems Sleep problems

Figure 7.13: Boxplot of Care coordination Navigation Figure 7.14: Boxplot of Care coordination question

135 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Care Co-ordination - Care Received 10 8 6 4 2

No sleep problems Sleep problems

Figure 7.15: Boxplot of Care Received

Table 7.5: Summary statistics and Two sample t test sleep problem status Care Group Number Mean SD T df P Coordination Total Score No Sleep 16 68.06 11.24 0.58 48 0.5644 problems

Sleep 34 65.59 15.17 problems

Navigation No Sleep 16 25.69 4.44 -0.60 48 0.5492 problems Sleep 34 26.65 5.58 problems

Table 7.6: Summary statistics Wilcoxon rank sum test with continuity correction sleep problem status Care Group Number Median IQR W P Coordination Communication No Sleep 16 45.00 15.25 308.50 0.4535 problems Sleep problems 34 39.00 12.75 Care No Sleep 16 8.00 2.00 328.00 0.2426 coordination problems Sleep problems 34 7.00 4.00 Care received No Sleep 16 8.00 1.00 331.50 0.2071 problems Sleep problems 34 8.00 2.75

136 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Comparisons of Care Coordination scores by arthritis assumptions for normality and variance were not met, status a Wilcoxon rank sum test with continuity correction was used (Table 7.8). No statistically significant Comparisons of Care Coordination scores were made differences were observed between these two groups between participants with and without arthritis. A for any Care Coordination scores (Tables 7.7 and 7.8). two-sample t-test was used when assumptions for normality and variance were met (Table 7.7), or when

Care Co-ordination - Total Score Care Co-ordination - Communication 60 90 80 50 70 40 60 50 30 40 20 30

No arthritis Arthritis No arthritis Arthritis

Figure 7.16: Boxplot of Care coordination total score 7.17: Boxplot of Care coordination Communication

Care Co-ordination - Navigation Care Co-ordination - Co-ordination of Care 35 10 8 30 6 25 4 20 2 15

No arthritis Arthritis No arthritis Arthritis

Figure 7.18: Boxplot of Care coordination Navigation Figure 7.19: Boxplot of Care coordination question

137 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Care Co-ordination - Care Received 10 8 6 4 2

No arthritis Arthritis

Figure 7.20: Boxplot of Care Received

Table 7.7: Summary statistics and Two sample t test arthritis Care Group Number Mean SD T df P Coordination Total Score No Arthritis 26 67.65 13.97 0.67 48 0.5977 Arthritis 24 65.00 14.14 Navigation No Arthritis 26 25.92 5.30 -0.58 48 0.5615 Arthritis 24 26.79 5.19

Table 7.8: Summary statistics Wilcoxon rank sum test with continuity correction arthritis Care Group Number Median IQR W P Coordination Communication No Arthritis 26 44.00 14.25 351.50 0.4483 Arthritis 24 37.00 13.50

Care No Arthritis 26 7.00 3.75 289.50 0.6654 coordination Arthritis 24 8.00 2.00 Care received No Arthritis 26 8.00 2.00 270.50 0.4130 Arthritis 24 8.00 1.25

138 Chronic Heart Failure 2017 Australian PEEK Study Section 7 Comparisons of Care Coordination scores by a Wilcoxon rank sum test with continuity correction arrhythmia status was used (Table 7.10). A two-sample t-test indicated that participants with arrhythmia (M=27.96, SD = Comparisons of Care Coordination scores were made 4.40) had a significantly higher score for the between participants with and without arrhythmia. A navigation subscale than those without (M=24.85, SD two-sample t-test was used when assumptions for = 5.53), t(48) = -2.19, p=0.0335 (Table 7.9). normality and variance were met (Table 7.9), or when assumptions for normality and variance were not met,

Care Co-ordination - Total Score Care Co-ordination - Communication 60 90 80 50 70 40 60 50 30 40 20 30

No arrhythmia Arrhythmia No arrhythmia Arrhythmia

Figure 7.21: Boxplot of Care coordination total score 7.22: Boxplot of Care coordination Communication

Care Co-ordination - Navigation Care Co-ordination - Co-ordination of Care 35 10 8 30 6 25 4 20 2 15

No arrhythmia Arrhythmia No arrhythmia Arrhythmia

Figure 7.23: Boxplot of Care coordination Navigation Figure 7.24: Boxplot of Care coordination question

139 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Care Co-ordination - Care Received 10 8 6 4 2

No arrhythmia Arrhythmia

Figure 7.25: Boxplot of Care Received

Table 7.9: Summary statistics and Two sample t test arrhythmia Care Group Number Mean SD T df P Coordination Total Score No 26 63.27 15.89 -1.67 48 0.1017 arrhythmia Arrhythmia 24 69.75 10.88 Navigation No 26 24.85 5.53 -2.19 48 0.0335* arrhythmia Arrhythmia 24 27.96 4.40 *Statistically significant at p<0.05

Table 7.10: Summary statistics Wilcoxon rank sum test with continuity correction arrhythmia Care Group Number Median IQR W P Coordination Communication No arrhythmia 26 39.00 17.75 290.00 0.6760 Arrhythmia 24 43.50 11.50

Care No arrhythmia 26 7.50 5.00 332.50 0.6942 coordination Arrhythmia 24 7.50 3.00 Care received No arrhythmia 26 8.00 4.50 275.50 0.4723 Arrhythmia 24 8.00 1.00

140 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Comparisons of Care Coordination scores by (Table 7.11), or when assumptions for normality and hypertension status variance were not met, a Wilcoxon rank sum test with continuity correction was used (Table 7.12). No Comparisons of Care Coordination scores were made statistically significant differences were observed between those that with hypertension compared between these two groups for any Care Coordination without. A two-sample t-test was used when scores (Tables 7.11 and 7.12) assumptions for normality and variance were met

Care Co-ordination - Total Score Care Co-ordination - Communication 60 90 80 50 70 40 60 50 30 40 20 30

No hypertension Hypertension No hypertension Hypertension

Figure 7.26: Boxplot of Care coordination total score 7.27: Boxplot of Care coordination Communication

Care Co-ordination - Navigation Care Co-ordination - Co-ordination of Care 35 10 8 30 6 25 4 20 2 15

No hypertension Hypertension No hypertension Hypertension

Figure 7.28: Boxplot of Care coordination Navigation Figure 7.29: Boxplot of Care coordination question

141 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Care Co-ordination - Care Received 10 8 6 4 2

No hypertension Hypertension

Figure 7.30: Boxplot of Care Received

Table 7.11: Summary statistics and Two sample t test hypertension Care Group Number Mean SD T df P Coordination Navigation No 26 24.96 5.05 -2.01 48 0.0506 Hypertension Hypertension 24 27.83 5.07

Table 7.12: Summary statistics Wilcoxon rank sum test with continuity correction hypertenison Care Group Number Median IQR W P Coordination Total score No 26 68.00 16.50 256.00 0.2808 Hypertension Hypertension 24 73.50 23.25 Communication No 26 40.50 12.75 286.00 0.6201 Hypertension Hypertension 24 44.50 12.50 Care No 26 7.00 3.00 265.00 0.3606 coordination Hypertension Hypertension 24 8.00 3.50 Care received No 26 8.00 1.00 265.00 0.3532 Hypertension Hypertension 24 8.50 3.25

142 Chronic Heart Failure 2017 Australian PEEK Study Section 7 Comparisons of Care Coordination scores by not met, a Wilcoxon rank sum test with continuity hyperkalaemia status correction was used (Table 7.13). No statistically significant differences were observed between these Comparisons of Care Coordination scores were made two groups for any Care Coordination scores (Table between those that with hyperkalaemia compared 7.13) without. Assumptions for normality and variance were

Care Co-ordination - Total Score Care Co-ordination - Communication 60 90 80 50 70 40 60 50 30 40 20 30

No hyperkalaemia Hyperkalaemia No hyperkalaemia Hyperkalaemia

Figure 7.31: Boxplot of Care coordination total score 7.32: Boxplot of Care coordination Communication

Care Co-ordination - Navigation Care Co-ordination - Co-ordination of Care 35 10 8 30 6 25 4 20 2 15

No hyperkalaemia Hyperkalaemia No hyperkalaemia Hyperkalaemia

Figure 7.33: Boxplot of Care coordination Navigation Figure 7.34: Boxplot of Care coordination question

143 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Care Co-ordination - Care Received 10 8 6 4 2

No hyperkalaemia Hyperkalaemia

Figure 7.35: Boxplot of Care Received

Table 7.13: Summary statistics Wilcoxon rank sum test with continuity correction hyperkalaemia Care Group Number Median IQR W P Coordination Total score No 45 68.00 20.00 72.00 0.1955 hyperkalaemia Hyperkalaemia 5 78.00 1.00 Communication No 45 40.00 14.00 96.50 0.6158 hyperkalaemia Hyperkalaemia 5 46.00 4.00 Navigation No 45 27.00 6.00 80.5 0.3047 hyperkalaemia Hyperkalaemia 5 31.00 6.00 Care No 45 7.00 3.00 82.00 0.3260 coordination hyperkalaemia Hyperkalaemia 5 8.00 1.00 Care received No 45 8.00 2.00 94.50 0.5607 hyperkalaemia Hyperkalaemia 5 9.00 1.00

144 Chronic Heart Failure 2017 Australian PEEK Study Section 7

Experience of care and support “Support from my family, my immediate family is always very good. They make sure I don't ... Participants were asked what care and support they sometimes they're just a bit too much and make sure had received throughout their experience. The I'm not carrying stuff or ... everyone's great.” majority of participants described care and support [Participant 39] coming from family and friends (n=29; 58.00%), and this was the most common theme followed by care The second most common theme was support from and support accessed from the hospital setting (n=26; the hospital setting (n=26; 52.00%) which often 52.00%) and from other patients (n=10; 20.00%). included support from cardiac rehabilitation: Participants with class I/Class II disease described “Oh, yeah. So, I've had a lot of support in terms of support from the hospital setting less frequently than rehabilitation. Especially, so, what happens is they participants with class III/class IV (40.00% compared referred me from the METROPOLITAN HOSPITAL back to 57.14% for class III/class IV). Participants in to the METROPOLITAN HOSPITAL for my rehab, regional/rural areas also described this less frequently cardiac rehab at the METROPOLITAN HOSPITAL. And than participants in metropolitan areas (42.86% I just joined that programme and I think that was a compared to 58.62% in metropolitan areas.) 12-week-program, twice a week in rehab. And through that, at the end of each session, they would In relation to care and support from family and have someone come in and talk. So, we would have a friends, participants spoke about family getting in and dietitian. We'd have a pharmacist talk about helping where and when it was needed: medication or we would have someone coming in “All the family came around and they spent time talking about the physio, talking about things. So, we with me and, you know, spoiled me to a certain just had so much support in terms of, if you weren't degree and cooked meals and did all sorts of things sure about anything.” [Participant 34] so yeah, I was pretty well looked after, you know, “We've had nothing from outside of family, and from that point of view.” [Participant 11] practitioners, and the nursing at the hospital. That's “From family, we've, they looked after me quite a bit the only - the cardiac rehab programme... outside but in particular we needed a lot of childcare help we've had, has virtually been the cardiac assistance, and they helped me do that. They looked rehab.” [Participant 45] after our little boy and he didn't have to go into “I've had ...The heart Rehab. The Cardiac rehab childcare all that young, so that was one thing.” helped. I got a lot out of that, but I had to stop [Participant 32] because the parking was too expensive.” [Participant 28] Table 7.14: Care and support received

Care and support received Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes support from 9 60.00 20 57.14 13 61.90 16 55.17 29 58.00 family/friends Participant describes support from 6 40.00 20 57.14 9 42.86 17 58.62 26 52.00 hospital setting Participant describes support from 3 20.00 7 20.00 1 4.76 9 31.03 10 20.00 talking with other patients/support group

Care and support received Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes support from 20 58.82 15 62.50 15 62.50 14 58.33 3 60.00 29 58.00 family/friends Participant describes support from 17 50.00 12 50.00 11 45.83 12 50.00 2 40.00 26 52.00 hospital setting Participant describes support from 7 20.59 6 25.00 5 20.83 7 29.17 0 0.00 10 20.00 talking with other patients/support group

145 Chronic Heart Failure 2017 Australian PEEK Study Section 7

70

60

50

40

30

20

10

0 Participant describes support from Participant describes support from Participant describes support from talking family/friends hospital setting with other patients/support group

Figure 7.36: Care and support received (% of all participants)

146 Chronic Heart Failure 2017 Australian PEEK Study Section 8

Section 8 Quality of life

Chronic Heart Failure 2017 Australian PEEK Study Section 8

Section 8: Experience of quality of life Summary Quality of life • There were four key themes identified in relation to impact on quality of life, with the most common theme being the impact on their family (n=16; 32.00%), followed by an impact on the individual in relation to their personal identity (n=16; 32.00%). Other themes included the impact of fatigue and needing to slow down (n=11; 22.00%) and difficulty travelling (n=9; 18.00%). • There were two variations in relation to sub-groups. Participants with Class I/Class II disease described not being able to travel less frequently than participants with Class III/Class IV participants as well as the general cohort (6.67% compared to 22.86% for Class III/Class IV participants and 18.00% for the general population). Participants with Class I/Class II disease described the impact on family dynamics less frequently than participants with Class III/Class IV participants as well as the general cohort (20.00% compared to 37.14% for Class III/Class IV participants and 32.00% for the general population). Within this same theme, participants in regional/rural areas were more likely to describe an impact (42.86% for regional/rural participants compared to 24.14% for metropolitan participants). Regular activities to maintain health • Participants were asked what were some of the things that they needed to do regularly to maintain their health. There were 22 participants (44.00%) that described needing take things slowly and have regular rest to maintain their health. There were also 22 participants (44.00%) that described the need for gentle exercise to maintain their health and these were the most common themes followed by the need to adhere to regular medication (n=19; 38.00%). Impact on relationships • Participants were asked whether having heart failure has had an impact on their relationships with family and friends. The main theme identified was that relationships had not been affected (n=11; 22.00%). In contrast, 11 participants (22.00%) described a negative impact in relation to being more withdrawn or feeling isolated because of their condition while 10 participants (20.00%) relationships becoming stronger and feeling supported. • There were two variations in relation to sub-groups. There were no participants with Class I/Class II disease that described being more withdrawn or feeling isolated and this sub-group described no effect on relationships more frequently that participants with Class III/Class IV disease (40.00% compared to 14.29% of Class III/Class IV participants and 22.00% in the general cohort). • As a follow-up question, participants were asked whether they felt their condition had resulted in any additional burden on their family. There were 24 participants (48.00%) that felt as though there was not an extra burden on their family. Within that group 13 participants noted that their condition was part of their everyday life and family members tended to get in and help when needed. There were 13 participants (26.00%) that described some burden, particularly if they had a short-term exacerbation or medical event. • There was one variation in relation to sub-groups. Participants with arrhythmias described feeling as though there was no additional burden on their family less frequently than the general cohort (12.50% compared to 22.00% in the general cohort).

Anxiety and fear of progression • The Fear of Progression questionnaire measures the level of anxiety people experience in relation to their

148 Chronic Heart Failure 2017 Australian PEEK Study Section 8 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 32.48, which is a score in the middle of the scale. • Participants with Class III and IV disease had higher scores for the Fear of Progression Total Score, compared with those with Class I and II disease, indicating those with worse more progressed disease have a higher fear of progression or anxiety in relation to their disease. • Participants without hypertension and without arthritis had higher scores for the Fear of Progression Total Score, compared with those with hypertension and with arthritis respectively, indicating those without hypertension and without arthritis have a higher fear of progression.

149 Chronic Heart Failure 2017 Australian PEEK Study Section 8 Experience of quality of life something's gonna happen…..When I was working at the time, I'd drive an hour and a half to work and Participants were asked whether their condition has back…I'd be driving down the highway coming back had an impact on their quality of life. There were four from work, and if I came across some roadworks key themes identified in this section, with the most anywhere and I was stood still for about 10 or 15 common theme being the impact on their family minutes, I'd get a phone call and it'd be saying, "Are (n=16; 32.00%), followed by an impact on the you okay?" They were always sort of ... not checking individual in relation to their personal identity (n=16; up on me, but just concerned about where I am. So 32.00%). Other themes included the impact of fatigue that does affect the family life.” [Participant 26] and needing to slow down (n=11; 22.00%) and difficulty travelling (n=9; 18.00%). In relation to the theme of an impact on the individual in relation to their personal identity (n=16; 32.00%), There were two variations in relation to sub-groups. participants described not being able to do some of Participants with Class I/Class II disease described not the fundamental activities that were important to being able to travel, less frequently than participants them and that this has changed part of who they used with Class III/Class IV participants as well as the to be: general cohort (6.67% compared to 22.86% for Class III/Class IV participants and 18.00% for the general “I find I cancel a lot of things. So that's probably the population). Participants with Class I/Class II disease biggest impact, for me. Yeah. Yeah. The old me is also described the impact on family dynamics less gone. I guess that's the biggest part of it, the old you frequently than participants with Class III/Class IV is gone. The new you is not quite as fit and active participants as well as the general cohort (20.00% and lovely, so ... yeah. I think that's the biggest compared to 37.14% for Class III/Class IV participants thing.” [Participant 3] and 32.00% for the general population). Within this “Well, it has, because I don't work anymore. And same theme of difficulty travelling, participants in that's to do with a few factors, but yeah, I sort of lost regional/rural areas were more likely to describe an my confidence a little bit. As far as what I was, and impact (42.86% for regional/rural participants what I could manage. I'm filling in my time like a compared to 24.14% for metropolitan participants). bored house wife at the moment, but it's not a lot of The participants that spoke about the impact on quality, no. I'd rather be working.” [Participant 10] family described not being able to contribute to family “Yeah, well my quality of life, am I allowed to say it life as much as they would like to and changing the totally sucks. That's what it's done. That's what it's dynamics of family relationships: done. Physically, that's what it's done. Mentally, it's “Oh, in my parenting, with my daughter. I was first made me, absolutely made me different. Yeah, so as diagnosed when she was quite little…I couldn't be an for my siblings and family and friends, I think they're active run-around, do-things mother. Because I was getting a bit of a buzz out of it, because you know, to just too tired or I was unwell. So my parenting with actually tell them that I love them, I just never did her has been totally different to my parenting with that before. That was a great question. Made me my other children. And that's really been affected. So think a lot, there you go.” [Participant 35] she hasn't had the best of me. And that's really sad. But she's a very compassionate young woman now, so I'm hoping that's a good thing. I'm concerned about things like her having to come in and be a carer and that sort of thing, when she's older, that worries me. I don't want that.”. [Participant 7] “It makes life very difficult for my husband. He's my carer. I can't travel on my own. I can't shop on my own. A lot of that has also not just the heart that's got a big thing in it, is because of my spine. I don't know how much it's all affected my body. I find it frustrating.” [Participant 25] “Well, it's affected my wife, of course. My wife, she's only just recently retired, but she was working at the time. She was always worried about me, because she'd go off to work and she would worry that

150 Chronic Heart Failure 2017 Australian PEEK Study Section 8 There were nine participants (18.00%) that spoke “Yes, because I probably before, and it's affected the about challenges with travelling. Participants fact that I often wonder whether I'll get over all this described not being able to travel, usually with their nerve damage and be able to go away on holidays family, as they felt nervous about travelling given and everything like I used to do before.” [Participant their condition: 29] “Well, I'd like to think that it has curtailed me to “Yeah like it definitely stops me doing things that I some extent, the quality of my life, because when I probably still love. I haven’t been on an airplane was younger, about several years back when my since only because I don't like being in confined husband and I, we decided to retire, we were looking spaces because I'm always stressed that my device is at travelling. But we were looking at travel or, you going to go off” [Participant 41] know, doing things together more actively. But somehow later now, I'm a bit scared to ride a plane or to go on a cruise.” [Participant 24]

Table 8.1: Quality of life

Impact on quality of life Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes impact of a 3 20.00 13 37.14 9 42.86 7 24.14 16 32.00 change in family dynamic/increased anxiety of family members in relation to their condition Participant describes significant 4 26.67 12 34.29 7 33.33 9 31.03 16 32.00 impact (change in person they used to be) Participant describes impact of 2 13.33 9 25.71 7 33.33 4 13.79 11 22.00 fatigue in reducing ability to do things (needing to slow down) Participant describes impact of 1 6.67 8 22.86 3 14.29 6 20.69 9 18.00 difficulty travelling Participant describes not being able 0 0.00 6 17.14 1 4.76 5 17.24 6 12.00 to go out with friends/family (Impact on social life) Participant describes losing self 0 0.00 6 17.14 2 9.52 4 13.79 6 12.00 confidence Participant describes having a good 4 26.67 2 5.71 1 4.76 5 17.24 6 12.00 quality of life Participant describes impact on 0 0.00 5 14.29 1 4.76 4 13.79 5 10.00 general activities of daily living

Impact on quality of life Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes impact of a 11 32.35 7 29.17 10 41.67 8 33.33 2 40.00 16 32.00 change in family dynamic/increased anxiety of family members in relation to their condition Participant describes significant 10 29.41 5 20.83 9 37.50 7 29.17 3 60.00 16 32.00 impact (change in person they used to be) Participant describes impact of 8 23.53 5 20.83 3 12.50 7 29.17 2 40.00 11 22.00 fatigue in reducing ability to do things (needing to slow down) Participant describes impact of 8 23.53 7 29.17 6 25.00 8 33.33 1 20.00 9 18.00 difficulty travelling Participant describes not being able 5 14.71 3 12.50 3 12.50 4 16.67 0 0.00 6 12.00 to go out with friends/family (Impact on social life) Participant describes losing self 6 17.65 3 12.50 5 20.83 2 8.33 1 20.00 6 12.00 confidence Participant describes having a good 3 8.82 3 12.50 2 8.33 3 12.50 0 0.00 6 12.00 quality of life Participant describes impact on 5 14.71 5 20.83 3 12.50 4 16.67 1 20.00 5 10.00 general activities of daily living

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Figure 8.1: Quality of life (% of all participants) running here, running there, everywhere. For me Everyday activities to manage health now, it is about thinking ahead and knowing what needs to be done for a week or the next day, any Participants were asked what were some of the things timeframe. I just sort of prioritise what I really want that they needed to do regularly to maintain their to get done or what I really want to do, in compared health. There were 22 participants (44.00%) that to knowing that I have to do this, this, this, and this, described needing take things slowly and have regular before I can do that, because I can't do it all without rest to maintain their health. There were also 22 absolutely collapsing on a couch and with no participants (44.00%) that described the need for energy.” [Participant 23] gentle exercise to maintain their health and these “Try and rest, I've now resigned myself to having to were the most common themes followed by the need use a walker, and I've got a wheelchair. Pride takes a to adhere to regular medication (n=19; 38.00%). lot of that. I've always been a walker. I can't even walk the dogs. The frustration's huge as far as that The participants that described the need to take goes. I've tried. That was before my spine started things slowly an know their limitations spoke about really playing out. I'm lucky to struggled at 50 needing to change their pace of life and ensuring that metres. I find the walkers help because I've they had adequate rest in order to maintain their stopped...When we go to the shopping centres health: they've taken a lot of the seats away. You look at it “I know my limitations and I do the things I can do, and you think I can't make it to that next stage.” and the things I can't do I don't worry about [Participant 25] anymore. And my husband's now retired so he picks As noted, there were also 22 participants (44.00%) up what I can't do and so what I can't do anymore I that described needing gentle exercise to maintain don't worry about.” [Participant 5] their health. While participants described needing “Mainly it is just for me about controlling how much I exercise, they also commented on the challenge of do. In my mind, I can still do everything and I still exercise given the nature of their condition and want to do everything. I would running around balancing the side effects of their condition with the everywhere doing this, doing that. I was a very active impact that physical exertion has on them: volunteer in the community with kids at school and “I'm trying to work on that and exercise, but it's a bit of a vicious circle. So the less, the more tired you are, the less you do.” [Participant 12]

152 Chronic Heart Failure 2017 Australian PEEK Study Section 8 “Walking, taking medications, monitoring the fluid about the best thing I can do, and I try to do that. I to know whether I have to- it's such a juggling act, try to get out and move around. Lose weight and because if you go take a tablet in the morning and move around. That's on top of the list. My experience you know you're going out, somewhere, it's a is that if my heart is not beating or pumping blood nightmare, so it tends to be a thing” [Participant 15] properly, it affects everything else.” [Participant 26] “And I need to exercise. And of course I'm sort of limited in what exercise I can do. Walking's probably

Table 8.2: Everyday activities to manage health

Everyday activities to manage Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 health n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes need to take 5 33.33 17 48.57 10 47.62 12 41.38 22 44.00 things slowly and needing regular rest Participant describes need for 8 53.33 14 40.00 10 47.62 12 41.38 22 44.00 gentle exercise Participant describes need for 6 40.00 13 37.14 6 28.57 13 44.83 19 38.00 regular medication 2 13.33 9 25.71 3 14.29 8 27.59 11 22.00 Participant describes managing diet Participant describes need to 3 20.00 3 8.57 3 14.29 3 10.34 6 12.00 lose/maintain weight

Everyday activities to manage Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants health (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes need to take 16 47.06 11 45.83 13 54.17 13 54.17 3 60.00 22 44.00 things slowly and needing regular rest Participant describes need for gentle 14 41.18 11 45.83 10 41.67 12 50.00 3 60.00 22 44.00 exercise Participant describes need for 13 38.24 7 29.17 9 37.50 10 41.67 2 40.00 19 38.00 regular medication Participant describes managing diet 7 20.59 5 20.83 5 20.83 7 29.17 1 20.00 11 22.00 Participant describes need to 5 14.71 5 20.83 1 4.17 4 16.67 1 20.00 6 12.00 lose/maintain weight

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Figure 8.2: Everyday activities to manage health (% of all participants)

153 Chronic Heart Failure 2017 Australian PEEK Study Section 8 Impact on relationships with family and friends “No, things have actually come together better. I mean, I see more of my kids than I ever had for Participants were asked whether having heart failure months, years. My partner's very caring and you has had an impact on their relationships with family know, she went out of her way and got special, you and friends. The main theme identified was that know, sort of chairs” [Participant 11] relationships had not been affected (n=11; 22.00%). In contrast, 11 participants (22.00%) described a “Yeah, I think so. But not in a negative way. I think negative impact in relation to being more withdrawn it's actually been, I hate saying it, but I think it was a or feeling isolated because of their condition while 10 good thing in terms of, I think my husband and I participants (20.00%) relationships becoming stronger actually grew closer through our experience rather and feeling supported. than it doing negative things. We were stronger in our relationship, and also even with my family I think There were two variations in relation to sub-groups. I grew closer to both our families through the There were no participants with Class I/Class II disease experience.” [Participant 32] that described being more withdrawn or feeling isolated and this sub-group described no effect on “No. It's made them stronger. Definitely stronger. relationships more frequently that participants with Seriously, I've been with NAME for 25 years and if Class III/Class IV disease (40.00% compared to 14.29% you really want to get your relationship on track, you of Class III/Class IV participants and 22.00% in the just have a heart attack. Fantastic. [laughs] Yeah, no, general cohort). really good. That's definitely been in a positive way. If that's possible. Yeah, I think the kids feel, like, the Support from family and friends has been a recurring same. Kids don't really let things ... They just keep theme throughout this PEEK study. In this section, going on with their lives really. But we ... But yeah, participants again spoke about the value they place definitely personal and friendships, yeah. No, on the support received by their family and the definitely. Family, yeah, it's great.” [Participant 34] important role that they play:

Table 8.3: Impact on relationships

Impact on relationships Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes relationships 6 40.00 5 14.29 5 23.81 6 20.69 11 22.00 not being affected Participant describes relationships 0 0.00 11 31.43 5 23.81 6 20.69 11 22.00 being more withdrawn (isolated) Participant describes relationships 1 6.67 9 25.71 3 14.29 7 24.14 10 20.00 becoming stronger/being supported Participant describes relationships 0 0.00 5 14.29 1 4.76 4 13.79 5 10.00 the emotional impact, stress and impact on intimacy Participant describes emotional 3 20.00 2 5.71 2 9.52 3 10.34 5 10.00 stress placed on family (fear)

Impact on relationships Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes relationships 6 17.65 4 16.67 3 12.50 4 16.67 1 20.00 11 22.00 not being affected Participant describes relationships 10 29.41 7 29.17 7 29.17 5 20.83 1 20.00 11 22.00 being more withdrawn (isolated) Participant describes relationships 6 17.65 4 16.67 5 20.83 4 16.67 0 0.00 10 20.00 becoming stronger/being supported Participant describes relationships 4 11.76 2 8.33 3 12.50 1 4.17 1 20.00 5 10.00 the emotional impact, stress and impact on intimacy Participant describes emotional 4 11.76 1 4.17 3 12.50 3 12.50 1 20.00 5 10.00 stress placed on family (fear)

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Figure 8.3: Impact on relationships (% of all participants)

As a follow-up question, participants were asked (22.00%) that described some burden, particularly if whether they felt their condition had resulted in any they had a short-term exacerbation or medical event. additional burden on their family. There were 24 There was one variation in relation to sub-groups. participants (48.00%) that felt as though there was Participants with arrhythmias described feeling as not an extra burden on their family. Within that group though there was no additional burden on their family 13 participants noted that their condition was part of less frequently than the general cohort (12.50% their everyday life and family members tended to get compared to 22.00% in the general cohort). in and help when needed. There were 13 participants

Table 8.4: Burden on family

Burden on family Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes no burden 2 13.33 11 31.43 5 23.81 8 27.59 13 26.00 rather condition as part of family life, everyone gets in and helps when needed Participant describes burden as 4 26.67 9 25.71 4 19.05 9 31.03 13 26.00 needing to rely on others for support (short term) 4 26.67 7 20.00 5 23.81 6 20.69 11 22.00 Participant describes no burden

Burden on family Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes no burden 8 23.53 6 25.00 6 25.00 7 29.17 1 20.00 13 26.00 rather condition as part of family life, everyone gets in and helps when needed Participant describes burden as 10 29.41 7 29.17 10 41.67 8 33.33 1 20.00 13 26.00 needing to rely on others for support (short term) Participant describes no burden 6 17.65 6 25.00 3 12.50 6 25.00 2 40.00 11 22.00

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Figure 8.4: Burden on family (% of all participants) Experience of anxiety related to disease progression and variance were not met, a Wilcoxon rank sum test with continuity correction was used (Table 8.7). The Fear of Progression questionnaire measures the level of anxiety people experience in relation to their Two-sample t-tests indicated a significant difference conditions. The Fear of Progression questionnaire in FOPTS between participants with Class I and II comprises a total score, with a higher score denoting disease (M=27.33, SD=8.38) and those with Class III increased anxiety. Summary statistics for the entire and IV disease (M=34.69, SD=10.35), t(48) = -2.43, p= cohort are displayed alongside the possible range of 0.0191 , those with Class III and IV experiencing a the scale in Table 8.5. Overall the entire cohort had a worse fear of progression (Table 8.1). Participants mean total score of 32.48, which is a score in the with arthritis (M=28.33, SD =8.53) compared to those middle of the scale. without (M=36.31, SD =10.44), t(48) = 2.94, p=0.0050, those without arthritis experiencing a worse fear of Boxplots of FOPTS by class of disease, location, sleep progression (Table 8.6). problem status, arthritis status, arrhythmia status, hypertension status, and hyperkalemia status are A Wilcoxon rank sum test with continuity correction displayed in Figures 8.5 to 8.11. indicated that those without hypertension experienced a worse fear of progression compared to Comparisons of FOPTS were made by class of disease, those with hypertension. A significant difference was location, sleep problem status, arthritis status, observed in median FOPTS scores between those with arrhythmia status, hypertension status, and hypertension (Mdn = 29.0, IQR = 10.75) and those hyperkalemia status. A two-sample t-test was used without hypertension (Mdn = 35.5, IQR = 9.50), when assumptions for normality and variance were W=455.00, p=0.0056 (Table 8.7). met (Table 8.6), or when assumptions for normality

Table 8.5: Fear of Progression Total Score Scale Mean SD Possible range

Total score 32.48 10.30 12-60

156 Chronic Heart Failure 2017 Australian PEEK Study Section 8

FOPTS by NYHA Class FOPTS by location 50 50 40 40 30 30 20 20

Class I and II Class III and IV Major city Regional area

Figure 8.5: Boxplot of FOPTS by CHF class Figure 8.6: Boxplot of of FOPTS by location

FOPTS by sleep problems FOPTS by arthritis status 50 50 40 40 30 30 20 20

No sleep problems Sleep problems No arthitis Arthritis

Figure 8.7: Boxplot of FOPTS by sleep problem status Figure 8.8: Boxplot of FOPTS by arthritis status

157 Chronic Heart Failure 2017 Australian PEEK Study Section 8

FOPTS by arrhythmia status FOPTS by hyptertension status 50 50 40 40 30 30 20 20

No arrhythmia Arrhythmia No hypertension Hypertension

Figure 8.9: Boxplot of FOPTS by arrhythmia status Figure 8.10: Boxplot of FOPTS by hypertension status

FOPTS by hypterkalaemia status 50 40 30 20

No hyperkalaemia Hyperkalaemia

Figure 8.11: Boxplot of FOPTS by hyperkalemia status

158 Chronic Heart Failure 2017 Australian PEEK Study Section 8 Table 8.6: Summary statistics and two sample t-test FOPTS FOPTS Group Count Mean SD t df p Class of disease Class I and II 15 27.33 8.38 -2.43 48 0.0191* Class III and IV 35 34.69 10.35

Location Major City 29 32.69 9.63 0.17 48 0.8677 Regional 21 32.19 11.39 Sleep problems No Sleep Problems 16 31.38 10.50 -0.52 48 0.6078 Sleep Problems 34 33.0 10.32 Arthritis No Arthritis 26 36.31 10.44 2.94 48 0.0050* Arthritis 24 28.33 8.53 Arrhythmia No Arrhythmia 26 31.46 11.0 -0.72 48 0.4723 Arrhythmia 24 33.58 9.60 Hyperkalemia No Hyperkalemia 45 32.93 10.20 0.93 48 0.3656 status Hyperkalemia 5 28.40 11.46 * Statistically significant at p<0.005

Table 8.7: Summary statistics Wilcoxon rank sum test with continuity correction of FOPTS by hypertension status

SF36 subscale Group Count Median IQR W P

Hypertension status No Hypertension 26 35.5 9.50 455.00 0.0056*

Hypertension 24 29.0 10.75

159 Chronic Heart Failure 2017 Australian PEEK Study Section 9 Section 9 Expectations and messages

Chronic Heart Failure 2017 Australian PEEK Study Section 9

Section 9: Expectations of future treatment, care and support, information and communication

Summary

Expectations of future treatment • When asked about their expectations of future treatment, there were a number of themes that emerged, however no theme had a frequency of more than eight. Themes included the expectation of better diagnostic tests (n=6; 12.00%), the expectations of treatments that are less invasive (n=6; 12.00%), and the expectation that treatments will stabilise or slow disease progression (n=5; 10.00%). There were two additional themes that emerged from this question. There were eight participants (16.00%) that spoke about being satisfied and grateful for current treatments and the health system, and this was the most frequent theme. There were also five participants (10.00%) that spoke about finding hope in new treatments and the expectation of more research. • There was a variation between sub-groups in relation to being satisfied and grateful for current treatments and the health system. Participants with Class I/Class II disease spoke about this more frequently than participants with Stage III/Stage IV disease and the general cohort (33.33% compared to 8.57% of Stage III/Stage IV participants and 16.00% within the general cohort). • Participants were asked how many months to years of good quality of life they would expect a treatment to provide to feel that it was a worthwhile treatment. Overall, the highest number of participants wanted a treatment to last for 10 years or more (N= 19, 38.00%). By groups, 10 years or more was the highest response for subgroups by location, sleep problem status, and hyperkalaemia status; and for NYHA Class II and IV, those with arthritis, with hypertension and those without arrhythmia. Equal amounts of participants without arthritis and those with arrhythmia wanted either between five and ten years or more than ten years, and most without hypertension and NYHA class II and IV participants wanted between five and 10 years. • 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 shortness of breath, tiredness and heart palpitations, the least important constipation, loss of appetite and cough. In relation to sub-group variations, the main difference was that pain was the most important symptom to control for disease class I and II, and for both city and regional locations. • Participants were asked to rank what is important for them overall when they make decisions about treatment and care. The most important aspects were safety of treatment/weighing up risks and benefits, severity of side effects and impact on quality of life. The least important were cost, ability to stick to treatment and including family in decision-making. • 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 and access for all patients to all treatments and services, the least important was economic value to government.

Expectation of future information provision

• Participants were asked what they would like to see in the future in relation to information provision. The most frequent theme was that participants were satisfied with the information that they had access to (n=15; 30.00%). Where participants had recommendations for the future, the most common themes were information about everyday life and what to expect (n=6; 12.00%), information that provides a technical or detailed explanation of how the heart works and the need for more information that is specifically about heart failure and the sub-types (n=5; 10.00%).

Expectation of future healthcare professional communication 161 Chronic Heart Failure 2017 Australian PEEK Study Section 9 • Participants were asked whether there was anything they would like to see improved in the future in relation to the way that health professionals communicate with patients. The most frequent theme was the expectation that health professionals communicate with more compassion, empathy and patience (n=21; 42.00%). There were 19 participants (38.00%) that described being happy with the communication they had with health professionals and this was the second most common theme. • There was one variation between sub-groups in relation to participants that were satisfied with communication. Participants with arthritis noted this less frequently than the general cohort (20.83% compared to 38.00% in the general cohort).

Expectation of future care and support • There were three main themes identified including recommendations to develop initiatives that support patients between appointments (n=14; 28.00%) and recommendations to provide more connection with other patients (n=11; 22.00%). There were also 11 participants (22.00%) that were satisfied with care and support and did not have a specific recommendation. Messages • Participants were asked what their message to people who make decisions about their condition would be. The most common theme described by more than half of participants (n=27; 54.00%) was the message that decision-makers need to consider the person in front of them and understand the complexities of their situation, not only the economics. The second most common theme was the message that costs need to be more consistent to ensure equitable access to treatments and services (n=11; 22.00%). This was followed by calls for more funding into research and services (n=8; 16.00%). There were also six participants (12.00%) that specifically described being appreciative of the health system in Australia.

162 Chronic Heart Failure 2017 Australian PEEK Study Section 9 Expectations of future treatment have a talk. I can't see at the moment that I'd want anything to change, I mean.” [Participant 16] Participants were asked a series of questions about their expectations for future treatments, information, “I'm incredibly thankful and grateful that we are health professional communication, and care and living in a time and place where I can get this support. treatment. I can get this kind of procedure done with very little expense. I don't know. 100 years ago I When asked about their expectations of future don't know how long somebody with my condition treatment, there were a number of themes that can stay. Not even well, but alive before their heart emerged, however no theme had a frequency of more goes, "No. I'm done." When I think about what than eight. Themes included the expectation of better they've achieved, it would be great if they could fix it diagnostic tests (n=6; 12.00%), the expectations of with surgery but at the same time I'm still her and I treatments that are less invasive (n=6; 12.00%), and feel well and I feel normal. I've got a machine that's the expectation that treatments will stabilise or slow kind of working 100% of the time with the bottom disease progression (n=5; 10.00%). There were two part of my heart, so I'm quite thankful. For my additional themes that emerged from this question. particular condition. I don't know about other heart There were eight participants (16.00%) that spoke conditions, whether or not they would feel the same, about being satisfied and grateful for current but I'm quite thankful that they were able to fix it. treatments and the health system, and this was the Especially at my age. Fix it enough that I can get on most frequent theme. There were also five with life.” [Participant 20] participants (10.00%) that spoke about finding hope in new treatments and the expectation of more While not a treatment as such, the theme of better research. diagnostic tests was described by six participants There was a variation between sub-groups in relation (12.00%). The participants that noted this spoke about to being satisfied and grateful for current treatments this in the context of being able to access treatments and the health system. Participants with Class I/Class sooner: II disease spoke about this more frequently than participants with Stage III/Stage IV disease and the “Ideally I'd like to see is everyone gets tested for general cohort (33.33% compared to 8.57% of Stage medical. So that ... if there's something lurking in the III/Stage IV participants and 16.00% within the general background, you pick it up before it's something cohort). In relation to this theme, participants spoke horrendous. Yeah. I don't know that there's anything about being grateful for the health system and being that you can change right now. And I am rural, so for able to access treatments: a city person, it'd be very different.” [Participant 3]

“Well, all my treatment was excellent. And it was “I would just like to see more of an earlier detection spot on, so I can see nothing wrong with that. The program. I mean, I did like the provocativeness with only thing that I found very hard was getting in to the bowel cancer screening. I mean, well, mine was see a specialist about the condition. That was a way overdue so I rang them up and said, "Where's problem for me. That was, my doctor, without him, I my kit" and I'm one of those people, I am proactive, don't think I would have ... I would have been so I got the results back from that and I think that's something like three to four months behind the great. I'd like to see more people, you know, take operation. Everything, everything was done for me blood tests or I wish there was a particular test that on the ... We had no expenses. It was done through could see if you were, you know, public. Even my specialist, I was lucky, the cardiac possible for heart disease but the problem is specialist is the head of cardiac surgery.” [Participant everyone waits until they get sick and then want the 9] magic pill to make them better and it doesn't happen.” [Participant 11] “I don't know that I'd want anything to change. I like where we've gotten to. I mean, I'm back in over 50%. “Something to stop people from dying. My biggest I'd like to think that I won't ever drop below it as wish, it'd be something to prevent sudden cardiac long as I keep doing what the doc says, stick to the death. That would be my biggest wish, probably.” medication that's working and all of that. But I think [Participant 37] you've still gotta stay vigilant and smart, and know that ... and listen to your body. If something's not quite working, then you need to go to the phone and

163 Chronic Heart Failure 2017 Australian PEEK Study Section 9 The theme of treatments that are less invasive was that without major surgery, so I'm happy with the described by six participants (12.00%). Participants progress that medicine is taking. Maybe one day spoke about this in the context of both surgery and they will grow a heart out of your own genes.” implantable devices: [Participant 39]

“What would I like to see from new treatments in the “Well, I would certainly like to see more research procedure side would be less invasive treatments, going into maybe something less invasive that which they've already improved over the years from having your chest cut open. Yeah, so to see more open heart surgery to now catheter-style procedures, researching, non-invasive kinds of ways. I mean they which is brilliant.” [Participant 26] can go up into your heart now with the angiogram, and do things, so maybe further down the track they “New treatment? Smaller implants. I know there is a could do something more, basically if the need to small implant now, but I'm not sure how good that repair something, that they can do it the same sort of is, how effective it is, how long it'll last, all of that. I way, rather than have to ... Rip open your chest, I need to have a valve replaced, and I know you can do think.”[Participant 45]

Table 9.1: Expectations of future treatment

Expectations of treatments Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes being satisfied with 5 33.33 3 8.57 3 14.29 5 17.24 8 16.00 and/or grateful for current treatment Participant describes the expectation of 2 13.33 4 11.43 2 9.52 4 13.79 6 12.00 better diagnostic tests for early detection/prevent cardiac events Participant describes the expectation of 2 13.33 4 11.43 3 14.29 3 10.34 6 12.00 treatments that are less invasive/more practical Participant describes finding hope in new 0 0.00 5 14.29 3 14.29 2 6.90 5 10.00 treatments and expectation of more research Participant describes the expectation of 1 6.67 4 11.43 3 14.29 2 6.90 5 10.00 treatments that will stabilise or control disease/slow progression of disease

Expectations of treatments Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes being satisfied with 6 17.65 4 16.67 4 16.67 3 12.50 0 0.00 8 16.00 and/or grateful for current treatment Participant describes the expectation of 2 5.88 3 12.50 3 12.50 0 0.00 0 0.00 6 12.00 better diagnostic tests for early detection/prevent cardiac events Participant describes the expectation of 4 11.76 2 8.33 2 8.33 5 20.83 1 20.00 6 12.00 treatments that are less invasive/more practical Participant describes finding hope in new 3 8.82 2 8.33 2 8.33 3 12.50 1 20.00 5 10.00 treatments and expectation of more research Participant describes the expectation of 4 11.76 3 12.50 4 16.67 1 4.17 0 0.00 5 10.00 treatments that will stabilise or control disease/slow progression of disease

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0 Participant Participant Participant Participant Participant Participant Participant Participant Participant describes being describes the describes the describes finding describes the describes the describes the describes the describes the satisfied with expectation of expectation of hope in new expectation of expectation of expectation that expectation that expectation that and/or grateful for better diagnostic treatments that treatments and treatments that treatments that treatments will treatments will they would not current treatment tests for early are less expectation of will stabilise or have less side improve quality of improve quality of have to take so detection/prevent invasive/more more research control effects/manage life life [Improve many pills cardiac events practical disease/slow symptoms breathing/Reduce progression of [General] shortness of disease breath]

Figure 9.1: Expectations of future treatment (% of all participants)

Future treatments and decision making status, and hyperkalaemia status; and for NYHA Class II and IV, those with arthritis, with hypertension and Participants were asked how many months to years of those without arrhythmia. Equal amounts of good quality of life they would expect a treatment to participants without arthritis and those with provide to feel that it was a worthwhile treatment. arrhythmia wanted either between five and ten years Overall, the highest number of participants wanted a or more than ten years, and most without treatment to last for 10 years or more (N= 19, hypertension and NYHA class II and IV participants 38.00%). By groups, 10 years or more was the highest wanted between five and 10 years. response for subgroups by location, sleep problem

Table 9.2: Expectations of future treatment: progression Less than 1 year 1 year – less 2 years – less 5 years – less More than 10 than 2 years than 5 years than 10 years years N % N % N % N % N % All Participants All participants 6 12.00 4 8.00 8 16.00 13 26.00 19 38.00 NHYA Class Class I and II 1 6.67 1 6.67 4 26.67 5 33.33 4 26.67 Class II and IV 5 14.29 3 8.57 4 11.43 8 22.86 15 42.86 Location Major city 4 13.79 4 13.79 5 17.24 7 24.14 9 31.03 Regional 2 9.52 0 0.00 3 14.29 6 28.57 10 47.62 Sleep problem status No sleep 1 6.25 2 12.50 4 25.00 4 25.00 5 31.25 problems Sleep problems 5 14.71 2 5.88 4 11.76 8 23.53 15 44.12 Arthritis status

165 Chronic Heart Failure 2017 Australian PEEK Study Section 9 No Arthritis 3 11.54 3 11.54 4 15.38 8 30.77 8 30.77 Arthritis 3 12.50 1 4.17 4 6.67 5 20.83 11 45.83 Arrhythmia status No arrhythmia 1 3.85 2 7.69 3 11.54 7 26.92 13 50.00 Arrhythmia 5 20.83 2 8.33 5 20.83 6 25.00 6 25.00 Hypertension status No hypertension 3 11.54 3 11.54 5 19.23 8 30.77 7 26.92 Hypertension 3 12.5 1 8.33 3 12.50 5 20.83 12 50.00 Hyperkalaemia status No 5 11.11 4 8.89 7 15.56 12 26.67 17 37.78 hyperkalaemia Hyperkalaemia 1 20 0 0.00 1 20.00 1 20.00 2 40.00

166 Chronic Heart Failure 2017 Australian PEEK Study Section 9

Values when making decisions about treatment the greater value it is to participants. The most important aspects reported were shortness of breath, Symptoms/aspects of quality of life important for tiredness and heart palpitations, the least important treatments constipation, loss of appetite and cough. Figures 9.3 and 9.4 show the weighted rank by disease class and Participants were asked to rank which location, the symptoms and aspects of quality of life symptoms/aspects of quality of life would they want are similar within sub groups and are similar to the controlled in a treatment for them to consider taking overall cohort, the main difference is that pain is the it, were 1 is the most important and 10 is the least most important symptom for disease class I and II, important. A weighted average is presented in Figure and for both city and regional locations. 9.2. With a weighted ranking, the higher the score,

9 8 7 6 5 4 3 2 1 0

Figure 9.2: Symptoms/aspects of quality of life important for treatments all participants (weighted rank)

Constipated Constipated Not hungry Not hungry Coughing Coughing Feeling sad or worried Feeling sad or worried Feeling dizzy Feeling dizzy Feeling tired Feeling tired Heart palpitations Heart palpitations Pain in chest Pain in chest Swollen ankles, leg, or stomach Swollen ankles, leg, or stomach Short of breath Short of breath 0 2 4 6 8 10 0 2 4 6 8 10 Class III and IV Class I and II Class III and IV Class I and II

167 Chronic Heart Failure 2017 Australian PEEK Study Section 9 Figure 9.3: Symptoms/aspects of quality of life important Figure 9.4: Symptoms/aspects of quality of life for treatments by location important for treatments by disease class

Values that are important to patients when making The most important aspects were safety of treatment/weighing up risks and benefits, severity of decisions side effects and impact on quality of life. The least important were cost, ability to stick to treatment and Participants were asked to rank what is important for including family in decision-making. Figures 9.6 and them overall when they make decisions about 9.7 show the weighted rank by disease class and treatment and care, where 1 is the most important Location, the values for making treatment decisions and 8 is the least important. A weighted average is are similar within sub groups and are similar to the presented in Figure 9.5. With a weighted ranking, the overall cohort. higher the score, the greater value it is to participants.

Financial costs participant

Ability to stick treatment

Include family in treatment decisions

Personalised treatment

How treatment is administered

Time impact of treatment on QOL

Severity side effects

Medication safety, risk/benefit

0 1 2 3 4 5 6 7 8

Figure 9.5: Values important when making decisions (weighted rank)

Financial costs participant Constipated Ability to stick treatment Not hungry Coughing Include family in treatment decisions Feeling sad or worried Personalised treatment Feeling dizzy How treatment is administered Feeling tired Time impact of treatment on QOL Heart palpitations Severity side effects Pain in chest Medication safety, risk/benefit Swollen ankles, leg, or stomach

0 1 2 3 4 5 6 7 8 Short of breath

Class III and IV Class I and II 0 2 4 6 8 10 Regional areas Major city

Figure 9.6: Values important when making decisions (by Figure 9.7: Values important when making decisions stage of disease) (by location)

168 Chronic Heart Failure 2017 Australian PEEK Study Section 9

Values that are important to patients when others weighted ranking, the higher the score, the greater value it is to participants. The two most important are making decisions on their behalf values were quality of life 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 9.9 and 9.10 decision-makers to consider when they make show the weighted rank by disease class and location, decisions that impact treatment and care, where 1 is the values for making decisions on their behalf are the most important and 5 is the least important. A similar within sub groups and are similar to the overall weighted average is presented in Figure 9.8. With a cohort.

Access to all treatments and services

Compassion

Quality of life for patients

Economic value to patients

Economic value to government

0 1 2 3 4 5

Figure 9.8: Values to consider on behalf of patients/families (weighted rank)

Access to all treatments and services Access to all treatments and services

Compassion Compassion

Quality of life for patients Quality of life for patients

Economic value to patients Economic value to patients

Economic value to government Economic value to government

0 1 2 3 4 5 0 1 2 3 4 5

Class III and IV Class I and II Regional areas Major city

Figure 9.9: Values to consider on behalf of Figure 9.10: Values to consider on behalf of patients/families (weighted rank by class of disease) patients/families (weighted rank by location)

169 Chronic Heart Failure 2017 Australian PEEK Study Section 9 Expectation of information provision “Oh. More information. Just more information to the patient to know exactly what he's got and what Participants were asked what they would like to see in outcomes are going to happen or what can possibly the future in relation to information provision. The happen, rather than just sitting and not having a most frequent theme was that participants were clue. I've seen what the worst case scenario is in satisfied with the information that they had access to death, but obviously there's got to be a lot more than (n=15; 30.00%). Where participants had that, I presume, they can go on. Just simple things recommendations for the future, the most common like, is it fixable or is a lifelong illness we have to themes were information about everyday life and control?” [Participant 31] what to expect (n=6; 12.00%), information that Participants that suggested more information that provides a technical or detailed explanation of how provides a technical or detailed explanation of how the heart works and the need for more information the heart works (n=5; 10.00%) described wanting to that is specifically about heart failure and the sub- know more about the physiology of the heart and types (n=5; 10.00%). how this relates to their specific condition: In relation to the recommendation that there be more “I think the stuff online is okay, but maybe more ... information about everyday life and what to expect what do you call them? Like YouTube videos? From (n=6; 12.00%), participants described wanting more like professional people that you can look at, that practical information and also, specific information explains little things and then have like their little about prognosis: diagrams and stuff like that. Just, I guess, to explain “Okay. About how to cope with life, with just the it better, to explain the difference between general day-to-day living with it, with heart failure. congestive and diastolic and all those little things. Because they give you lots of information about Because you don't ... sometimes, and I guess it's that what it is and what pills to take and what to eat and overload of information thing ... Doctors either don't that sort of thing, but they don't give you much mention one of those or they do tell you and you information about how to make your life easier. Life have no idea what that means. I think, yeah. Or hacks. Things like that, because that's important too. when you're sent home, having a specialised They didn't give us a lot of information about what package to the concerns for your health, not just a to start expecting of yourself. So I didn't realise I'd general, "This is heart failure." You know what I become so weak, for example, and that's been really mean?” [Participant 18] hard to take. I'd didn't realise that I would end up “I would like information on how it affects your body, with no sex life at 52. You know, things like that. And as in the physical terms. I can't quite work out evidently that's quite common, because of all the fitness, physically. Physiologically. I would love to medication and everything. But no one told me that know a bit more about what fitness is physiologically that was a possibility, and it was like, "Whoa! This is and know how to balance that with the heart. I not fun." Yeah, so that sort of thing.” [Participant 7] mean, my cardiologist has said half an hour exercise, “Yes, some more information, practical information, I and my GP suggested swimming would be good.” suppose we were told the medical benefits et cetera, [Participant 36] and so on." [Participant 15]

170 Chronic Heart Failure 2017 Australian PEEK Study Section 9 Table 9.3: Expectations of information provision

Expectations of information Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 provision n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant describes being satisfied with 6 40.00 9 25.71 5 23.81 10 34.48 15 30.00 current information - no recommendation Participant recommends access to more 2 13.33 4 11.43 1 4.76 5 17.24 6 12.00 information about how to manage everyday life and what to expect [including palliative care and advance care directive] Participant recommends access to more 2 13.33 4 11.43 4 19.05 2 6.90 6 12.00 technical explanations of how the heart works and interactions between conditions Participant recommends access to more 2 13.33 3 8.57 4 19.05 1 3.45 5 10.00 comprehensive and /or consistent information that is accesible when you need it [rather than bit-by-bit]

Expectations of information Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants provision (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant describes being satisfied with 9 26.47 8 33.33 7 29.17 8 33.33 3 60.00 15 30.00 current information - no recommendation Participant recommends access to more 4 11.76 3 12.50 0 0.00 3 12.50 1 20.00 6 12.00 information about how to manage everyday life and what to expect [including palliative care and advance care directive] Participant recommends access to more 6 17.65 2 8.33 4 16.67 2 8.33 0 0.00 6 12.00 technical explanations of how the heart works and interactions between conditions Participant recommends access to more 1 2.94 0 0.00 3 12.50 0 0.00 0 0.00 5 10.00 comprehensive and /or consistent information that is accesible when you need it [rather than bit-by-bit]

35

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0 Participant describes being satisfied Participant recommends access to Participant recommends access to Participant recommends access to with current information - no more information about how to more technical explanations of how more comprehensive and /or recommendation manage everyday life and what to the heart works and interactions consistent information that is expect [including palliative care and between conditions accesible when you need it [rather advance care directive] than bit-by-bit]

Figure 9.11: Expectations of information provision (% of all participants)

171 Chronic Heart Failure 2017 Australian PEEK Study Section 9 Expectation of health professional communication some cases, the expectation was that they are simply acknowledged by the clinician: Participants were asked whether there was anything they would like to see improved in the future in “I don't know whether I should say this, but quite relation to the way that health professionals often when you go, they're sitting on computers, and communicate with patients. The most frequent theme you don't feel as though you can talk because you was the expectation that health professionals might interfere with what they're doing. I find that communicate with more compassion, empathy and so different from the old doctors that I knew when I patience (n=21; 42.00%). There were 19 participants was younger who you could talk to and all that sort (38.00%) that described being happy with the of thing.” [Participant 8] communication they had with health professionals and this was the second most common theme. “Yes, I'd like to see them learn that patients aren't robots. Patients are humans that have worries, fears, There was one variation between sub-groups in and need someone to remember that, or for that relation to participants that were satisfied with professional to remember that, all right, this might communication. Participants with arthritis noted this be the fifth person they've seen today with heart less frequently than the general cohort (20.83% failure, but they're not used to it like you are. They compared to 38.00% in the general cohort). do forget that it's something they're used to dealing with but their patients aren't, and they really do Participants that called for health professionals to need a wake up call about that. [Participant 20] have more compassion, empathy and patience (n=21; 42.00%) described the expectation that specialists in “Just more clarity. More- More explanation, like the particular take more time to listen to patients and Cardiologist would come around surrounded by a provide more comprehensive and understandable team of junior Doctors, and they'd all talk amongst explanations of their conditions and treatments. In themselves, and if I wanted to ask a question it was like six pairs of eyes staring at me” [Participant 27]

Table 9.4: Expectations of health professional communication

Expectations of health professional Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 communication n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant recommends that there is more 8 53.33 13 37.14 9 42.86 12 41.38 21 42.00 compassion/empathy/patience Participant is satisfied with health 6 40.00 13 37.14 7 33.33 12 41.38 19 38.00 professional communication: No recommendations [some acceptance that it isn't going to be perfect] Participant recommends more open 0 0.00 5 14.29 2 9.52 3 10.34 5 10.00 communication about the patient's situation and provide options/what to expect

Expectations of health professional Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants communication (n=34) (n=24) (n=24) (n=24) (n=5) n=50 n= % n= % n= % n= % n= % n= % Participant recommends that there is more 15 44.12 14 58.33 10 41.67 12 50.00 3 60.00 21 42.00 compassion/empathy/patience Participant is satisfied with health 11 32.35 5 20.83 8 33.33 8 33.33 1 20.00 19 38.00 professional communication: No recommendations [some acceptance that it isn't going to be perfect] Participant recommends more open 4 11.76 3 12.50 3 12.50 2 8.33 1 20.00 5 10.00 communication about the patient's situation and provide options/what to expect

172 Chronic Heart Failure 2017 Australian PEEK Study Section 9

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0 Participant recommends that there is more Participant is satisfied with health Participant recommends more open compassion/empathy/patience professional communication: No communication about the patient's situation recommendations [some acceptance that it and provide options/what to expect isn't going to be perfect]

Figure 9.12: Expectations of health professional communication (% of all participants)

Expectation of care and support just that education. It it's too expensive so I'll take these ones today, and I'll take that one tomorrow I Participants were asked whether there was anything guess that sort of follow up care to go for a little bit they would like to see in relation to the way longer would be, even if just a phone call, here and healthcare professionals communicate. There were there, you just appreciate that someone's looking three main themes identified including out for you. I've always felt that too if you ring, just recommendations to develop initiatives that support answering machine and Ill call you back later, and I patients between appointments (n=14; 28.00%) and know that's obviously because their out talking to recommendations to provide more connection with people and working, but sometimes they just wanted other patients (n=11; 22.00%). There were also 11 to know right then and there.” [Participant 15] participants (22.00%) that were satisfied with care “I would really like in regional areas, because it and support and did not have a specific definitely seems to be what's not happening out here recommendation. ... but to be able to have ... like the physio lady or the Participants that recommended initiatives that heart failure nurse or whatever come to us support patients between appointments (n=14; sometimes, so that they can tell us how to do things, 28.00%) spoke about needing to have follow-up, like help. I don't even know how to explain it. Even usually by a nurse, between key appointments with show us, "Oh look, this could be a good exercise their specialist so that they can be assured that they because you've got a certain chair though" or are doing all of the right things: whatever. Sort of to help instead of being told in an appointment and then going home and going, "Oh. “Well I think the follow up care is vital, I think, I had How am I going to do that again?" It seems to be a a nurse come out I think twice to the house, and that regional hospital sort of thing.” [Participant 18] was terrific because she could see what I'm able to do and not able to do, and guide me sort of, through “Even if just on occasion, maybe whether it be a what I can do. I think that sort of thing, and that nurse practitioner or a cardiologist, or someone group, follow up with everybody meeting together so along that line of care, on our situation, just could be they can see you're not the only one going through available closer to us in a group setting even, just for this, I think that kind of social ... that is really good. I general questions or general information, to pick think that kind of follow up, not just let you go, like their brains a bit, because it changes. How I think okay, you've been in the hospital, you're out now, now is not how I was thinking 12 months ago or two see you later, take this pill, and come back in six years ago. My thought train now is a lot more months, its a bit isolating, and lucky I've got great positive than what it was when I was first diagnosed. family and friends around but if there's other people Once again, it is obviously something that takes, for who just get sent home and don't really know what's some people it takes time. There is no other support going on, one of the nurses told me once that she services available. I guess I can get on the phone and gets patients that come in and say well "I took my ring the nurse practitioner and generally, that has tablets and that was it." And they didn't realise they been my dramas. I have done that on a couple of give repeat on the tablets and keep taking them, and occasions. That has been great.” [Participant 23]

Chronic Heart Failure 2017 Australian PEEK Study 173 Section 9 Participants that recommended providing more “Yeah, I would like to see support groups. I feel like connection with other patients (n=11; 22.00%) there's not ... There's no support groups out there, described having more a more informal setting to talk and I had to search for them myself and it took me a about side effects and connect with people who are really long time. I mean I rang the heart foundation, I true peers, that is of a similar age with a similar rang lots of different places and it took me a long condition: time to find it. It's a group that meet up monthly and it was just ... Yeah. I'd like to see good you know, “Yeah. Maybe if there's more of like a support group heart support groups.” [Participant 28] that maybe they are around, but I'm not aware of them. Somethere you can talk about your symptoms. “Yeah, okay so something for the younger portion of If it does effect different day to day or I could help the market, I suppose. Again, maybe there's not someone else. That would be good, but like I said many, but it's geared up for people that are older, maybe they are out there, but I'm not aware of older than I, anyway. Yeah, something more aimed those.” [Participant 3] at younger ... I know there is a lot of young people that suffer from this, but I don't know what the figures are, percentage wise.” [Participant 35]

Table 9.5: Expectations of care and support

Expectations of care and support Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant recommends initiatives to 5 33.33 9 25.71 8 38.10 6 20.69 14 28.00 support patients between appointments Participant satisfied with care and support: 3 20.00 8 22.86 5 23.81 6 20.69 11 22.00 No recommendations Participant recommends providing more 3 20.00 8 22.86 3 14.29 8 27.59 11 22.00 connection with other patients [true peers]

Expectations of care and support Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant recommends initiatives to 10 29.41 8 33.33 7 29.17 6 25.00 0 0.00 14 28.00 support patients between appointments Participant satisfied with care and support: 8 23.53 4 16.67 4 16.67 7 29.17 3 60.00 11 22.00 No recommendations Participant recommends providing more 6 17.65 5 20.83 4 16.67 4 16.67 0 0.00 11 22.00 connection with other patients [true peers]

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0 Participant recommends Participant satisfied with Participant recommends initiatives to support care and support: No providing more connection patients between recommendations with other patients [true appointments peers] Figure 9.13: Expectations of care and support (% of all participants)

174 Chronic Heart Failure 2017 Australian PEEK Study Section 9 Messages to decision-makers about the treatment “I'd like to think that it would be helpful if they could and care that people affected by heart failure try to see ... I mean, let the patient see the whole picture in relation to their illness. Because some Participants were asked what their message to people people ... like if you have this kind of illness they will who make decisions about their condition would be. just say ... it's so compartmentalised, so you don't The most common theme described by more than half see how it is relevant to the whole picture of your of participants (n=27; 54.00%) was the message that body, for example. That's it. So I think it would be decision-makers need to consider the person in front helpful if the institution would really be able to of them and understand the complexities of their disseminate information. You know, how this is situation, not only the economics. The second most relevant to your ... Like for example, I would like to common theme was the message that costs need to think that doctor NAME has done that a certain be more consistent to ensure equitable access to degree. Like, you know, "NAME, this is your illness, treatments and services (n=11; 22.00%). This was but this is what ... and this is how this affects your followed by calls for more funding into research and whole body." So from that point of view you will get services (n=8; 16.00%). There were also six a picture and it's very helpful. For me it's very participants (12.00%) that specifically described being helpful. That's it.” [Participant 24] appreciative of the health system in Australia. “The government don't listen. They need to listen to Participants that called for decision-makers to those, like you're doing now - they need to listen to consider the person in front of them and understand the results of this study. Listen to people who are the complexities of their situation, not only the suffering from it, their needs. Not put the dollars as a economics (n=27; 54.00%) spoke about wanting priority. Talk to each other. Don't go off wasting decision-makers to take a more holistic view and money with all sorts of, I shouldn't be saying this to using the experience of patients to guide their you but talk to each other. A computer has a massive approach and their decisions: advantage of compiling data. Use it to actually compile data, but coordinate.” [Participant 25] “Well. First and foremost is just to have compassion. Try to walk in the shoes of the patient for at least a In relation to the message that costs need to be more day, you know, see what a day in their life is like, consistent to ensure equitable access to treatments before making decisions about their life. And to look and services (n=11; 22.00%), participants spoke about at quality of life, as being more important than the importance of access to subsidized medications quantity. Because a lot of them forget that. It's "life and the challenges in accessing subsidies and at all costs." And in this situation, with this type of reimbursements through existing mechanisms: illness, it's because it's usually so age-orientated, younger people are forgotten. So we're left on the “Sorry. I guess in the end the decision comes down to wayside to try and flounder through it, because I've the patient. I guess that people need support. You talked to other younger people in hospital… there look at what happened about the NDIS. That was was a gentleman my age, or two gentlemen my age. meant to make things easy for people. It's not. In One of them was in the same boat as I was. He had order to help people, you're keeping them in their no clue. And the other one had been, it was a own homes for as long as they can remain in their congenital heart problem so he'd known about it for homes for. It's actually cheaper for the government life, but he did not want a heart transplant. And his to have people remain in their own home, than it is view wasn't being respected. Because you know, to put all these people in nursing homes and it's "Oh, you should do this and you should, you should, cheaper to keep me out of hospital. And better for you should." But he knew that even if he had the myself to be out of hospital. I don't know, I guess transplant he wasn't going to have, his lifespan was there's just a lot of little things like, I know they can only maybe going to be extended by a year or two, subsidise every single medication. But if there's that so he thought, "No, I want the quality, I don't want one person that that medication will benefit from to be stuck in hospital." Yeah, and then another lady and they can't get it because it's for something like in my ward, she was 26, very young woman, but that say prostate cancer, that'll work for a heart was very hard for her. She just found out she was a condition, but the can't get it subsidised.” Type 1 diabetic and had a heart problem at the same [Participant 6] time. So that was incredibly hard. Yeah.” [Participant 7]

175 Chronic Heart Failure 2017 Australian PEEK Study Section 9 “Yep. I definitely think the biggest one would be the situation, I needed something and I was given it. The centre link, so Department of Human ... I don't know. defibrillator that is 50,000 I was given that, the two Whatever they call themselves. I think it's different in scans I can’t say thank you enough to the training every state. The fact that they make it so hard to get and the confidence that I had and installed to me even just a little bit of assistance, like a health care from the surgeons when it was done, and various card, which means I could go to the free dental clinic other things, the chest blockages and stuff like that and start getting my teeth fixed before I'd be would dent my program in the hospital, I can’t say assessed for a heart transplant. You know?” thank you enough.” [Participant 30] [Participant 18] “I think my experience has been one of, like I've been “I fully understand that we can't have every so grateful for everything that I've had exposure to. specialist in a town where there is only 5,000 people. And I haven't paid for a thing apart from my I understand that. Once again, it is our choice to live medications. And to have the free healthcare that we here, not to live in the bigger city. There needs to be have in this country, I'm born in COUNTRY, and so I a lot more clarity on the patient travel subsidies, know what other countries have and I think we are which we access. We do get money come back for so fortunate to have as many resources available for our travel, but it is a nightmare of a system and free. And I feel the quality of those resources are unless you yourself, the patient or staff, does a lot of actually quite quite good. Yeah and so I would homework, you miss out completely and there is no probably want to say that I'm grateful for those. I ifs and buts about it. To me, there is a lot of people, would hope that they would always be a priority and they are not even aware of it, let alone actually get that they would continue to offer those resources to to access it or when you are at an appointment, people.” [Participant 32] don't forget that signature on the form. Don't bring it back to me without it. We have been accessing it “I would acknowledge. I mean, I had all of my now, since then. Those 12 months, we were up and surgeries and everything done privately, and that back every two or three weeks, so it was a lot. It had was ... Some of the tests I paid for, like the stress to happen. It was the only way we could get the care echos and that, there is a cost, and so there are at the time, I needed. It was a real struggle to get medical practises that do that, and obviously there's any information we needed about that. Definitely, government refunds for those, and both that system needs a big overhaul.” [Participant 23] implantations were covered by government funding. Oh, no, sorry, sorry, that's private health funding. The participants (12.00%) that specifically described Anyway, I think it is. That's a very valuable service being appreciative of the health system in Australia that they offer, because, I mean, I wouldn't be here, valued being able to access the excellent services and and there would be lots of people similar to me in professionals within the Australian health system and that position. This is more of a holistic view, which I encouraged decision-makers to continue providing don't think is taken, but as I've sort of said, looking access to treatments and services to patients in the at this from a holistic perspective, just to future: acknowledge there are other effects, and maybe that people can be functioning and contributing to society “The fact that in my treatment there was no more if they perhaps have a bit of support in those expense, I don’t know whether that, if that would other areas.” [Participant 36] make a difference to anyone else because in my

176 Chronic Heart Failure 2017 Australian PEEK Study Section 9

Table 9.6: Messages to decision-makers

Messages to decision-makers Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant calls for decision-makers to 10 66.67 17 37.14 13 61.91 14 48.28 27 54.00 consider the person and understand the condition and that it is complex [Not just the economics] Participant calls for consistency in cost and 3 20.00 8 22.86 4 19.05 7 24.14 11 22.00 access Participant calls for more funding [increase 3 20.00 5 14.29 4 19.05 4 13.79 8 16.00 services/research and clincial trials] Participant notes and appreciates the 1 6.67 5 14.29 3 14.29 3 10.34 6 12.00 excellent health system in Australia

Messages to decision-makers Sleep problems Arthritis Arrhythmias Hypertension Hyperkalaemia All participants (n=34) (n=24) (n=24) (n=24) (n=5) n=50

n= % n= % n= % n= % n= % n= % Participant calls for decision-makers to 19 55.89 14 58.34 13 54.17 13 54.17 4 80.00 27 54.00 consider the person and understand the condition and that it is complex [Not just the economics] Participant calls for consistency in cost and 8 23.53 7 29.17 6 25.00 7 29.17 1 20.00 11 22.00 access Participant calls for more funding [increase 5 14.71 4 16.67 4 16.67 5 20.83 0 0.00 8 16.00 services/research and clincial trials] Participant notes and appreciates the 5 14.71 1 4.17 2 8.33 2 8.33 0 0.00 6 12.00 excellent health system in Australia

60

50

40

30

20

10

0 Participant calls for Participant calls for Participant calls for more Participant notes and decision-makers to consistency in cost and funding [increase appreciates the excellent consider the person and access services/research and health system in Australia understand the condition clincial trials] and that it is complex [Not just the economics]

Figure 9.14: Messages to decision-makers (% of all participants)

177 Chronic Heart Failure 2017 Australian PEEK Study Section 10 Section 10 Advice to other patients and families

Chronic Heart Failure 2017 Australian PEEK Study Section 10

Section 10: Advice to other patients and families Summary • Participants were asked what advice they would give to other people who are newly diagnosed with chronic heart failure and their families. There were three key themes of equal frequency identified to ask questions and be informed and assertive (n=15; 30.00%), seek help and have a good relationship with your healthcare team (n=15; 30.00%) and to find acceptance with your condition and know your limitations (n=15; 30.00%).

179 Chronic Heart Failure 2017 Australian PEEK Study Section 10 Advice to others diagnosed with heart failure Seek help and have a good relationship with your healthcare team Participants were asked what advice they would give to other people who are newly diagnosed with “Establish good relationships with your health care chronic heart failure and their families. There were professional. The other one, that I've got a good three key themes of equal frequency identified to ask relationship with your pharmacist. The day I was questions and be informed and assertive (n=15; diagnose-, the day I came out of hospital eight years 30.00%), seek help and have a good relationship with ago and I went to the pharmacy and I have your healthcare team (n=15; 30.00%) and to find continued at the same pharmacy. If I'm buying acceptance with your condition and know your anything, from Panadol to anything, it's at that same limitations (n=15; 30.00%). provider.” [Participant 12]

Ask questions, be informed and assertive “Yeah, I think a major thing is, is to listen and take

heed to what the medical practitioners are telling “Gather information rather than if you sit at home you. Follow their guidelines, but also follow what and just rely on what you're being told, that's okay your own body is telling you. I think you've really just for some people, but not for me. I like to know got to take heed to what your cardiologist or medical what's going on. So I can better understand my professional's telling you. They do know best at the condition and I can better explain it to other people a end of the day. Yeah, sometimes you may not feel lot easier….just from my own research and I tell them like they do, but they really do.” [Participant 17] I'm a researcher at my level as a patient and this is my understand of what's going on. I will put that “General advice. Talk to the nurses when you're in across. That sort of works really well for me. That's hospital. Sometimes they know a lot more than they given me a better peace of mind and I am more pretend to. As in, they can explain ... sometimes the comfortable with my condition now so if all of a doctors go in and go, "Blah, blah, blah." And they sudden my heart does start to race, you don't press have a little chat to themselves and whatever. Then the panic button.” [Participant 2] when your nurse comes back in to do a procedure or

something like that, ask them for the definitions, if “Always seek a second opinion if you're not happy. you haven't been able to ask the doctors, because Well I suppose I started to think psychologically I was yeah, I've found them to be really ... because they're just you know ... Something was going wrong with specialised. They're in a cardiac situation. They me psychologically as well. I started to doubt my know. And they know about services and different own feelings of how ill I felt you know? And that's things like that, like outside and they can ask the another thing I would say is don't give up on doctors who write the referrals for them. I think that yourself, make sure you find out what is the matter would be my biggest ... build a good rapport with the with you.” [Participant 5] nurses. They're there to help. They have a lot of

knowledge. And I know personally, myself, the last “I would advise them to, as I said before, to find out five or 10 years that I've been going to CITY, the as much information themselves and be their own same cardiac nurses have been there most of the case manager, so be proactive in what you want to time.” [Participant 18] find out, and to get that information from your doctor. That might mean asking a number of questions and taking a bit extra time, and reasonably doctors can't assume what you want to know. But sometimes patients don't know what they want to know as well, or can't verbalise what they want to know at the time of diagnosis and ongoing.”

[Participant 36]

180 Chronic Heart Failure 2017 Australian PEEK Study Section 10 Find acceptance and know your limitations “Anything I can say to people would ... to accept your diagnosis. In accepting it, that really helps because if “I'd say ... let me think. Just do the best you can, you don't accept things, you become very upset that's all. Don't worry about it because worrying only about things. I accept things and just do what I'm really makes it a lot worse. You've got it. You can't told to do.” [Participant 8] change it. Just do the best that you can and live with it. Don't be stupid, you know, go run a ten kilometre “acceptance is one, because when you accept marathon. Just be realistic about your limitations something that you have, well, you will be able to and what you can and can't do. Just hang in there, face your treatment more positively. And then I think sort of thing.” [Participant 2] one very helpful thing for me is to have more positive thoughts. That you're going to get well. Not really ... you're not going down the drain, but you're going to get well.” [Participant 24]

Table 10.1: Advice from patients

Advice to patients Class I/Class II Class III/Class IV Regional/Rural Metropolitan All participants n=50 n=15 n=35 n=21 n=29 n= % n= % n= % n= % n= % Participant recommends asking questions, 5 33.33 10 28.57 9 42.86 6 20.69 15 30.00 be informed and be assertive and take control of your own decisions [Including to seek a second opinion] Participant recommends seeking help 3 20.00 12 34.29 7 33.33 8 27.59 15 30.00 having a good relationship with your healthcare team and use services available to you Participant recommends to keep moving, 5 33.33 10 28.57 5 23.81 10 34.48 15 30.00 find acceptance with your condition, know your limitations and take it one day at a time

35

30

25

20

15

10

5

0 Participant recommends asking questions, Participant recommends seeking help Participant recommends to keep moving, be informed and be assertive and take having a good relationship with your find acceptance with your condition, know control of your own decisions [Including to healthcare team and use services available your limitations and take it one day at a seek a second opinion] to you time Figure 10.1: Advice from patients (% of all participants)

181 Chronic Heart Failure 2017 Australian PEEK Study Section 11 Section 11 Discussion

Chronic Heart Failure 2017 Australian PEEK Study Section 11

Symptoms and diagnosis supportive devices, post-discharge chronic heart failure programs and palliative care [3].

Heart failure can be difficult to diagnose as it remains largely asymptomatic, symptoms may not While non-pharmacological interventions are develop until relatively late, and symptoms are important to the management of CHF, participants often similar to other conditions making the in this PEEK study reported that the main distinction problematic [1]. The most common discussions about treatment focussed on disease symptom is dyspnoea (difficulty breathing) that progression and treatment options and there were initially presents with more strenuous exertion but few descriptions of non-pharmacological gradually progresses to occur at rest while interventions. Non-pharmacological management orthopnoea (shortness of breath when lying flat), includes physical activity, nutrition, fluid may also occur but typically at a later stage [1]. management, smoking, self-management, Dry irritating cough, fatigue and weakness are education and psychological support. Physical prominent but patients are often mistakenly activity and rehabilitation is encouraged to treated for asthma, bronchitis or other improve functional capacity and enhance the conditions[1, 2]. Dizzy spells or palpitations are ability of patients to perform activities of daily another symptom and can indicate an arrhythmia living [4]. Physical activity accompanied by a [1] while symptoms such as fluid retention are structured diet is also important in weight loss indicative of more advanced heart failure [1, 2]. which is essential in overweight patients to improve physical activity tolerance and quality of

life [5, 6]. Fluid management is also a key It is clear that the clinical manifestation of heart component in symptom monitoring and quality of failure can be extremely varied and this is life [7, 8]. In relation to nutrition, a review by consistent with the results of our study. In this Abshire et al. (2015) demonstrated that nutrition PEEK study, the most common symptoms interventions had a positive effect on patient experienced by all participants was feeling tired outcomes, however, while practice guidelines (fatigue), breathlessness and weakness, and many support a low-sodium diet and fluid restriction, participants described having a significant cardiac there is some evidence that diets low in sodium event that led them to their diagnosis. In relation may be harmful [9]. to specific symptoms leading to diagnosis, shortness of breath was the most commonly noted symptom followed by chest pain or Implantable medical devices including cardioverter palpitations. The majority of participants in this defibrillators (ICDs) and pacing technologies are an PEEK study were also able to clearly recall the important component of heart failure tests that they had at diagnosis citing a management [10]. ICDs are effective for reducing combination of tests that are used to diagnose mortality in heart failure patients who are at high CHF including electrocardiogram (ECG), chest X- risk for sudden cardiac death, however in relation ray, echocardiogram and measurement of plasma to quality of life, there are a number of electrolytes and full blood count [3]. psychological side effects to consider including depression, anxiety, panic attacks, stress and post-

traumatic stress [11]. Pacing technologies have Treatment been observed to improve symptoms, mortality, morbidity, and quality of life for patients with heart failure [12], however they also have a There is no cure for chronic heart failure however substantial impact on quality of life, particularly in there is a wide range of treatment options relation to anxiety [13]. available with successful treatment requiring a combination of therapies and strict adherence. These include non-pharmacological strategies, pharmacotherapy, surgical procedures and

183 Chronic Heart Failure 2017 Australian PEEK Study Section 11 There are several pharmacological therapy options Acceptance of illness is a complex process available. The most common treatments include modulated by several factors, such as angiotensin converting enzyme (ACE) inhibitors manifestation and severity of a disease, availability (ACEIs) and angiotensin II blockers (ARB), and quality of its treatment, individual mineralocorticoid receptor antagonists (MRAs), predisposition (temperament, emotions, stress, and beta-blockers which work through coping strategies, etc.), support from family neurohormonal inhibition [14]. ACEi therapy members and other close relatives and works by blocking the cleavage of angiotensin-I to socioeconomic status [22, 23]. Acceptance of angiotensin-II to inhibit the haemodynamic, illness is an important determinant of quality of neurohormonal and proliferative effects of life [22, 23] and perceived quality of life enables angiotensin-II, and benefits of this therapy have one to detect specific problems and to implement been observed in relation to reduced mortality individualized interventions and self-acceptance of and hospital admissions [15, 16]. health status modulates one’s level of activity and Mineralocorticoid receptor antagonists have been subsequent quality of life [24, 25]. Acceptance of established and implemented in the guidelines for illness also reduces the level of psychological patients with class II and IV heart failure, however distress and results in better medication an important adverse effect of this therapy was adherence and self-care [22]. It has also been observed in relation to hyperkalaemia [17, 18]. suggested that quality of life is determined by Both ACEi therapy and beta-blockers should both the level of acceptance of illness as well as commence at a low-dose, increasing over the sociodemographic and clinical factors [26]. clinical course and are often commenced following the diagnosis of heart failure [19]. There is limited data in relation to the efficacy of cardiac Clinical trials glycosides in heart failure, and while a recent study by the Digitalis Investigation Group showed a neutral effect for digoxin (digitalis) in relation to In this PEEK studies, 10 participants described mortality, there was a significant decrease in talking to their clinician about clinical trials, of hospitalisations [20]. In a spate study by Adams et whom nine went on to participate in a trial. A al (2016) patients with low serum levels of digoxin search of the ANZCTR clinical trials registry for did benefit and mortality in this subgroup was trials that have been open to recruitment in the significantly reduced [21]. past five years and listed “Chronic heart failure” as the health condition(s) studied, identified 43 clinical trials (ANZCTR website accessed The most common treatments reported by 21/12/2017). This indicates that CHF had participants in this PEEK study were beta blockers, reasonably good opportunities to participate in a diuretics, Asprin, statins, angiotensin II receptor trial. Of those trials, five studies were blockers and ACEi and overall, participants felt observational, including three prognostic studies, that treatments had been effective. When asked one care model, and one quality of life study. The about their ability to cope with side effects, most remaining 38 trials were interventional; 11 drug participants felt that they could cope with most trials, 11 lifestyle/behavioural modification side effects however there was an acceptance that studies, seven studies of devices, six care models, side effects were part of life and part of the two surgical trials and one prognostic using treatment doing its job. There was a general level imaging to decide which patients should receive of acceptance with participants in this PEEK study drugs. that they would experience side effects as part of life and one of the key pieces of advice that participants in this study also commonly stated Seventeen studies were conducted in single sites was for people newly diagnosed to find in Australia, the remaining 26 multi-centre studies acceptance with their conditions and this is a were conducted in between two and 57 sites concept that has been the focus of past studies. across Australia. The majority of trials had recruitment sites in Victoria (n=25) and New South Wales (16), fewer studies had recruitment sites in Queensland (n=9), South Australia (n=8), Tasmania 184 Chronic Heart Failure 2017 Australian PEEK Study Section 11 (n=5), and Australian Capital Territory (n=2). conditions. The authors considered a number of There were no trials conducted in the Northern variables such as anxiety, depression as well as Territory. depression levels among the target study group and some of the interventions noted were the

adoption of motivational interviews, collaboration Communication and support between health professionals and patients, and the adoption of cognitive behavior therapy models [28]. The authors recommended to adopt Participants in this PEEK study reported that they psychological and behavioral interventions was had very good communication with their nurse, based on their ability to improve patient's self- while another common theme was described as care skills as well as help reduce complications having difficulties in relation to communication associated with CHF and it was also noted that it is with their cardiologist. As a chronic condition, this imperative that healthcare providers consider the is a particularly important insight in relation to the social and cultural values of their patients, as this way patients interact with healthcare can motivate the patients to self-manage their professionals in the management of their disease. conditions [28].

In a systematic review by Flanagan et al. (2017), The participants in this PEEK study scored well in the authors investigate the effectiveness of relation to their knowledge, adherence to integrated care interventions and models in treatment, management of symptoms, and ability improving the quality of life for patients with to cope with information. The cohort chronic conditions [27]. In their review, the demonstrated that they have the ability to absorb authors included the use of case management information meaning that there is potential to models, discharge management as well as chronic further engage CHF patients in the decision- care model (CCM) and multidisciplinary teams making process. There is evidence to support the (MDT). The study findings support the use of use of patient-centered care models in major multidisciplinary teams in considering the social decision making in hospitals especially towards the and cultural needs of the patients [27]. Through management of heart failure [29]. In a review by the use of discharge management plans, Matlock et at. (2017), the authors recommend healthcare providers are able to include pre- that acknowledging the emotional and discharge support and transitional support to their psychological needs of a patient in major decision patients. Other major self-management activities can help improve primary care and help interventions based on the article findings include reduce additional social problems associated with the adoption of a healthy lifestyle, proper chronic disease and heart failure[29]. The authors medication and cognitive behavioral therapy do however note the need to use effective systems, proper dietary, goal settings and research methods including the analysis of the education to support breathlessness can also help patient’s values and attitudes, to build evidence- patients to control and manage their chronic based models to further support this [29]. The conditions [27]. While this article is among the article findings also support use of effective first comprehensive reviews of the international communication models and collaboration in evidence related to effective management of promoting patient-centered decision-making chronic conditions to improve quality of life of process[29]. patients, especially with long-term conditions, other variables such as patient attitudes and social values in the society were not taken into The participants in this PEEK study noted a strong consideration [27]. relationship with the nurses that cared for them. The impact of nurse-led initiatives in the context of CHF is an area of research that is still relatively A separate study by Jiang et al. (2017) discussed new, however it is important as it offers an avenue some of the psychological interventions that can to support the implementation of future be used to promote self-care and health care interventions. In an Australian study by Maru et al. among patients suffering from chronic heart (2017), the researchers assessed the cost- 185 Chronic Heart Failure 2017 Australian PEEK Study Section 11 effectiveness of a nurse-led program including Conclusion home and clinic visits that aimed to prevent progressive cardiac dysfunction[30]. The intervention was not a cost-effective program Within this PEEK study there were a number of however it did result in modest reductions in sub-groups that were analysed to determine emergency admissions and unplanned whether there were any variations between those readmissions [30]. sub-groups. These included stage of disease, conditions such as sleep problems, arthritis, arrhythmias and hypertension, as well as the In comparison, a European study conducted by geographic location of the participant Grustam et al (2015) to investigate the clinical and (regional/rural or metropolitan). In relation to cost effectiveness of telehealth support for class of disease, the most variations were patients with CHF found that telehealth support observed in participants with arrhythmias and and monitoring were more effective across both hypertension, followed by participants with dimensions compared to usual care, particularly in arthritis, and participants that lived in relation to reducing the length of hospital stays regional/rural areas. These insights provide us [31]. with a starting point to develop more individualized initiatives to support both the whole CHF community as well as sub-groups that have Quality of life specific requirements.

Quality of life is severely impaired in patients with There were specific challenges that participants CHF as they often present with comorbidities faced in relation to communication with their and are prone to experience disabling specialist, however this was balanced with a psychosocial consequences of their condition positive relationship with nurses. Likewise, (social isolation, fear, etc.) [32-35]. There are participants in this study had a good ability to several demographics and clinical factors known to absorb information and actively managed their impact quality of life such as young age, disease through regular medication, rest and disease severity and poor functional capacity gentle exercise. Together, these components offer [36]. a strong basis to implement future initiatives to support self-care, new treatments or interventions, information provision and overall Resting, knowing limits and gentle exercise enhance the experience of CHF patients in the were cited as some of the main things that community. participants in this PEEK study needed to do to maintain their health. While short-term aerobic exercise rehabilitation programs improve the aerobic capacity and quality of life of CHF patients, the impact on whole cardiovascular function and quality of life is less clear [37]. A review by Zhang (2016) aimed to explore the effect of short-term exercise intervention on the cardiovascular system and Quality of life of CHF patients through meta- analysis [38]. The review concluded that although, exercise cannot replace medication, it is an effective method for the cardiac rehabilitation of patients with CHF and is recommended [38]. Some of the clinical indicators noted in the review were aerobic capacity and cardiac output that were significantly improved however systolic blood pressure, heart rate and left ventricular ejection fraction had no significant difference [38]. 186

Chronic Heart Failure 2017 Australian PEEK Study Section 11 References 15. Investigators, S., et al., Effect of enalapril on survival in patients with reduced left ventricular

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188 Chronic Heart Failure 2017 Australian PEEK Study Section 12 Section 12 Next steps

Chronic Heart Failure 2017 Australian PEEK Study Section 12 Next steps

At the end of each PEEK study, CCDR identifies three key areas that, if improved, would significantly increase the quality of life and/or the ability for individuals to better manage their own health.

In relation to the CHF community, these three areas are:

• Treatments that stabilise disease and slow progression • Interventions that leverage relationships with nurses, support self-care and provide a point of contact between appointments • Initiatives to support effective communication and provide patients with more detailed information about their specific condition, noting this communication should be delivered with compassion, empathy and patience.

2017 CHF 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 2017 CHF metrics that the sector can work together to improve upon are provided in Table 12.1

Table 12.1: CHF 2017 Metrics Area of evaluation 2017 data Baseline health Mean Median Physical functioning 46.60* 50.00 Role limitations die to physical health 30.00 0.00 Role limitations due to emotional problems 64.00 64.00 Energy/fatigue 42.10* 40.00 Emotional well-being 68.24* 72.00 Social functioning 57.50 62.50 Pain 60.45 57.50 General health 36.30 35.00 Health change 48.50 50.00 Percentage of participants that have accessed My Health Record 24.00% Percentage of participants that have heard of CHF at diagnosis 2.00%

Percentage of participants that have a discussion about biomarkers/genetic 14.00% tests Percentage of participants where a clinical trial is discussed at diagnosis 20.00%

Knowledge of condition and treatments (Partners in Health) Mean Median Knowledge 25.96 26.00 Adherence to treatment 14.34 16.00 Management of symptoms 20.10 21.00 Coping 16.00 15.50 Total score 76.40 76.00

Care Coordination and care received Mean Median Care coordination (sub-score) 66.38* 69.50 Communication 40.04* 43.00 Navigation 26.34* 27.00 Care received 6.70 7.50 Total score 7.60 8.00 Fear of progression Mean Median Total Score 32.48* 32.50 *Normal distribution, use mean as measure of central tendency

Chronic Heart Failure 2017 Australian PEEK Study