2017 TIONS TA TIENT KNOWLEDGE PA EXPEC EXPERIENCE PEwww.cc-dr.orgE K 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 2 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.