Section 5 Treatment and health service provision

Section 5 Treatment and health service provision

Section 4: Experience of treatment Summary Treatments experienced The most commonly treatments reported were beta blockers (n=37; 74.%), followed by diuretics (n=35; 7.%), Aspirin (n=34; 68.%) and statins (n=33; 66.%). There were 24 participants (48.%) that reported being on Angiotensin II receptor blockers and 24 participants (48.%) that reported being on ACE inhibitors. There were also 17 participants (34.%) 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.). 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 4.6) 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.%). 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.%) and the second most common theme was that there was nothing that they were not able to cope with (n=5; 1.%). 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.%). This was followed by a change in the dose of medication (n=1; 2.%). 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.%) 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. 2 participants (4.%) 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 (2.%) 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 4.% 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.%), maintaining heart rhythm/not having palpitations (n=11; 22.%) and having more energy/less fatigue (n=11; 22.%). 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 Q1 (n=25; 5.%). There were 16 participants (32.%) 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, 7.%), most were treated as a public patient (n=27, 54.%), and had health insurance (n=29, 58.%). The majority of patients never had to cancel healthcare appointments (n=37, 74.%), and they were never unable to afford essential prescriptions (n=38, 76.%). However, half of the participants (n=25, 28.%) 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, 3.%) and changes in employment status resulting in lost income (n=31, 62.%).

Treatments experienced Participants were asked in the questionnaire to identify the treatments that they had experienced. The most commonly treatments reported were beta blockers (n=37; 74.%), followed by diuretics (n=35; 7.%), Aspirin (n=34; 68.%) and statins (n=33; Section 5 66.%). There were 24 participants (48.%) that reported being on Angiotensin II receptor blockers and 24 participants (48.%) that reported being on ACE inhibitors. There were also 17 participants (34.%) that reporting have a pacemaker or implantable cardiac defibrillator. Table 5.1: Treatments experienced Treatment Class I/Class II n=15 Class III/Class IV n=35 Metropolitan (n=29) Regional/Rural (n=21) (n=5) Beta blockers 1 66.67 27 77.14 22 75.86 15 71.43 37 74. Diuretics 7 46.67 28 8. 21 72.41 14 66.67 35 7. Asprin 9 6. 25 71.43 2 68.97 14 66.67 34 68. Statins. 22 62.86 22 75.86 11 52.38 33 66. Angiotensin II receptor blockers 6 4. 18 51.43 14 48.28 1 47.62 24 48. (ARBs) ACE inhibitors 4 26.67 2 57.14 14 48.28 1 47.62 24 48. Pacemaker or an implantable cardiac 5 33.33 12 34.29 8 27.59 9 42.86 17 34. defibrillator (ICD) Surgery 2 13.33 12 34.29 1 34.48 4 19.5 14 28. Glycosides 3 2. 1 28.57 6 2.69 7 33.33 13 26. Salcium channel blocker 4 26.67 5 14.29 8 27.59 1 4.76 9 18. Coronary bypass surgery 2 13.33 3 8.57 4 13.79 1 4.76 5 1. Vasodilators. 2 5.71 2 6.9. 2 4. Treatment Sleep problems (n=34) Arthritis Arrhythmias Hypertension Hyperkalaemia (n=5) (n=5) n= % Beta blockers 27 79.41 19 79.17 19 79.17 2 83.33 3 6. 37 74. Diuretics 25 73.53 17 7.83 17 7.83 18 75. 3 6. 35 7. Asprin 23 67.65 17 7.83 17 7.83 18 75. 2 4. 34 68. Statins 24 7.59 2 83.33 2 83.33 22 91.67 4 8. 33 66. Angiotensin II receptor blockers 16 47.6 1 41.67 1 41.67 14 58.33 2 4. 24 48. (ARBs) ACE inhibitors 2 58.82 1 41.67 1 41.67 1 41.67 4 8. 24 48. Pacemaker or an implantable 13 38.24 6 25. 6 25. 6 25. 3 6. 17 34. cardiac defibrillator (ICD) Surgery 1 29.41 7 29.17 7 29.17 6 25. 3 6. 14 28. Glycosides 9 26.47 8 33.33 8 33.33 5 2.83 3 6. 13 26. Salcium channel blocker 6 17.65 6 25. 6 25. 5 2.83 3 6. 9 18. Coronary bypass surgery 2 5.88 3 12.5 3 12.5 4 16.67. 5 1. Vasodilators 2 5.88 2 8.33 2 8.33 2 8.33 1 2. 2 4.

8 7 6 5 4 3 2 1 Beta blockers Diuretics Asprin Statins Angiotensin II receptor blockers (ARBs) ACE inhibitors Pacemaker or an implantable cardiac defibrillator (ICD) Surgery Glycosides Salcium channel blocker Coronary bypass surgery Vasodilators Figure 5.1: Treatments experienced (% of all participants) As a follow-up question (within the questionnaire), participants were asked to rate their quality of life on a scale of 1 to 7, while using each specific treatment (with 1 being Life was very distressing and 7 being Life was great ). 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 Aspirin (average score 4.32), angiotensin II receptor blockers (average score 4.25) and calcium channel blockers (average score 4.). 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). Table 5.2: Treatments experienced and mean quality of life Treatment n= Range Mean QoL score Life was very distressing (Score = 1) Life was distressing (Score = 2) Life was a little distressing (Score = 3) Life was average Life was good (Score = 4) (Score = 5) Life was very good (Score = 6) Life was great (Score = 7) n= % n= % Asprin 34 2 (min) 6 (max) Angiotensin II receptor blockers (ARBs) Calcium channel blocker 24 3 (min) 7 (max 9 2 (min) 5 (max Beta blockers 37 2 (min) 6 (max Pacemaker or an implantable cardiac defibrillator (ICD) 17 1 (min) 7 (max) Diuretics 35 2 (min) 7 (max) Statins 33 1 (min) 6 (max) Glycosides 13 2 (min) 6 (max) ACE inhibitors 24 1 (min) 5 (max) 4.32. 1 2.94. 21 61.76 11 32.35 1 2.94. 4.25.. 6 25. 8 33.33 9 37.5. 1 4.17 4.. 2 22.22 1 11.11 1 11.11 5 55.56.. 3.92. 5 13.51 4 1.81 18 48.65 9 24.32 1 2.7. 3.88 1 5.88. 6 35.29 5 29.41 4 23.53. 1 5.88 3.8. 4 11.43 12 34.29 8 22.86 1 28.57. 1 2.86 3.76 2 6.6 3 9.9 3 9.9 19 57.58 5 15.15 1 3.3. 3.69. 3 23.8 3 23.8 3 23.8 3 23.8 1 7.69. 3.58 2 8.33 1 4.17 5 2.83 13 54.17 3 12.5..

5 4.5 4 3.5 3 2.5 2 1.5 1.5 Asprin Angiotensin II receptor blockers (ARBs) Calcium channel blocker Beta blockers Pacemaker or an implantable cardiac defibrillator (ICD) Diuretics Statins Glycosides ACE inhibitors Figure 5.2: Treatments experienced and mean quality of life A second follow-up question was asked in relation to how effective the participant felt the treatment was on a scale of 1 to 5 (with 1 being ineffective and 5 being very effective). The treatments that had a mean effectiveness score of at least 4 (Effective) were diuretics (average score 4.6) 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). 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 Pacemaker or an implantable cardiac defibrillator (ICD) 17 3 (min) - 5(max) Diuretics 35 2 (min) - 5(max) Asprin 34 2 (min) - 5(max) Calcium channel blocker 9 2 (min) - 5(max Beta blockers 37 1 (min) - 5(max Angiotensin II receptor 24 1 (min) blockers (ARBs) 5 (max) ACE inhibitors 24 1 (min) 5 (max) Statins 33 2 (min) 5 (max) Glycosides 13 1 (min) 5 (max) 4.35.. 1.6 9.53 7.41 4.6. 2.6 8.23 11.31 14.4 3.94. 1.3 21.62 11.32 1.3 3.78. 1.11 2.22 4.44 2.22 3.62 2.5 5.14 5.14 18.49 7.19 3.5 1.4 5.21 4.17 9.38 5.21 3.38 4.17. 5.21 13.54 2.8 2.97. 8.24 4.12 1.3 6.18 2.85 4.31 2.15 1.8 4.31 2.15

5 4.5 4 3.5 3 2.5 2 1.5 1.5 Pacemaker or an implantable cardiac defibrillator (ICD) Diuretics Asprin Calcium channel blocker Beta blockers Angiotensin II receptor blockers (ARBs) ACE inhibitors Statins Glycosides Figure 5.3: Treatments experienced and effectiveness Side effects of treatment Participants were guided to reflect on the side effects that they had experienced from their various treatments. They were then asked two, separate questions in relation to the side effects that they felt they could cope with, and the side effects that were very difficult to cope with. Within this question, many participants were unable to articulate the exact side effects they could cope with, and instead went straight into talking about difficult side effects. There 16 participants that described having side effects, however learning to live them (n=16; 32.%). Within this this theme, there was an acceptance that side effects were part of life and part of the treatment doing its job: Yeah, the low blood pressure, the low heart rate, all those good things, but then they're good for a reason, so it's like... you've just got to live with it. Sounds terrible doesn't it?. [Participant 3] Look, I think I cope with all of it quite well because I'm quite aware of my body. I think I've learnt over the last six years to listen to the symptoms that your body produces, and then you can actually cope with whatever it's doing. [Participant 17] I don't know. I've kind of adjusted with each one. The teeth grinding, and the hair loss, and the gum pain, and all that kind of stuff, that doesn't bother me. I'm not one that stresses over how I look or whatever. I'm not stressed because I'm missing a tooth, or my hair is very thin. Best coped with. I don't know. I guess those. Yeah. It's something that you have to do. [Participant 33] One of them, and I can't remember the name of the drug now, it caused me to throw up. I had asthma, which I don't always suffer with. That changed that quickly. The only other side effects that I, sort of, talk about is probably the ones that most people suffer from. Things like nausea, vomiting, that type of thing. That you learn to live with that. Diarrhoea. Diarrhoea, that type of thing. But it's better than not having your treatment so you put up with it. Dry mouth. Dry mouth, lack of taste, that type of thing but you just live with it. [Participant 37]

Table 5.4: Side effects that participants could cope with Side effects participants are able to cope with Participant describes coping with side effects and learning to live with them Participant describes not having any side effects Class I/Class II n=15 Class III/Class IV n=35 Regional/Rural n=21 Metropolitan n=29 n=5 5 33.33 11 31.43 5 23.81 11 37.93 16 32. 3 2. 4 11.43 2 9.52 5 17.24 7 14. Side effects participants are able to cope with Sleep problems (n=34) Arthritis Arrhythmias Hypertension Hyperkalaemia (n=5) n=5 Participant describes coping with side effects and learning to live with them Participant describes not having any side effects n= % 9 26.47 6 25. 8 33.33 9 37.5 2 4. 16 32. 5 14.71 4 16.67 4 16.67 5 2.83 2 4. 7 14. 35 3 25 2 15 1 5 Participant describes coping with side effects and learning to live with them Participant describes not having any side effects Figure 5.4: Side effects that participants could cope with (% of all participants) 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.%) and the second most common theme was that there was nothing that they were not able to cope with (n=5; 1.%). In relation to dizziness, participants spoke about the impact on their everyday living and ability to function normally: The having to sit upright to sleep was terrible, and the dizziness was bad there for a while and really concerned me 'cause I was nearly sort of... Sitting up in bed and nearly keeling over. And the fact that I couldn't walk like from the car to the supermarket. [Participant 27] I just feel really bad. I can't do anything. I feel like I'm going to faint. I've got to go and sit down. [Participant 47] Well, I had to go off the medication with the low blood pressure, so I could not cope with that because of the dizziness. [Participant 1]

Table 5.5: Side effects that participants found difficult to cope with Side effects that are difficult to cope with Dizziness Non that they were not able to cope with Bad dreams Class I/Class II n=15 Class III/Class IV n=35 Regional/Rural n=21 Metropolitan n=29 n=5 2 13.33 5 14.29 5 23.81 2 6.9 7 14. 2 13.33 3 8.57 2 9.52 3 1.34 5 1. 1 6.67 3 8.57 1 4.76 3 1.34 4 8. Side effects that are difficult to cope with Sleep problems (n=34) Arthritis Arrhythmias Hypertension Hyperkalaemia (n=5) n=5 n= % Dizziness 6 17.65 3 12.5 5 2.83 3 12.5. 7 14. Non that they were not able to cope 3 8.82 2 8.33 1 4.17 4 16.67. 5 1. with Bad dreams 1 2.94 2 8.33 1 4.17.. 4 8. 16 14 12 1 8 6 4 2 Dizziness Non that they were not able to cope with Bad dreams Figure 5.5: Side effects that participants found difficult to cope with (% of all participants) 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.%). This was followed by a change in the dose of medication (n=1; 2.%). In relation to the change in medication due to side effects, participants spoke about also changing brand of treatment as a solution: Oh, yeah. We went from Coversyl to one of the other ones. Atacand. To Atacand, so that was when we'd talked to him about this cough that just didn't seem to go, and they'd said to us, "There's one of the side effects that comes from these tablets," but we thought going across to Atacand... it's eased it back. It's not quite as bad as it was. [Participant 26] Yeah, generally it was the low blood pressure and they couldn't get to the dosages that were optimal for the treatment. So they needed to try others that might be a bit more tolerated by my low blood pressure. [Participant 32] That was in the early introduction. I'd only done it for a few weeks, and I was just awake all night coughing and still having to go to work the next day, and so he decided that I should try something different. [Participant 48] The majority of participants described that their doctor has explained the reason for any change in medication, there were however seven participants

(14.%) 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: Not really. I just presumed because I was still, even though I take, with the furosemide, I take two in the morning and then one again at lunch time. I am always still having problems with fluid which seems to settle in my chest and also in one of my hands, and obviously my legs. He didn't go into detail, no. He just said that I needed to be... to try taking this other medication. If it has made a difference, it has probably only been a slight difference. [Participant 23] Section 5 No. He just said, "We need to change medication." And I think the cardiologist at the stress echo had asked me what I was on and said that needs to change. [Participant 36] No. Actually no he didn't. In my mind I just assumed, oh well the Toprol mustn't be working or it was because it was that caused the cardiac arrest perhaps. In my own head I thought I might have explained it to myself that perhaps Carvedilol is better for that condition. [Participant 18] 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). Table 5.6: Changes in medication Changes in medication Participant had a change in medication because of side effects/better to tolerate Participant had a change in medication (Change dose/titrating) Participant describes change in medication not being explained Class I/Class II n=15 Class III/Class IV n=35 Regional/Rural n=21 Metropolitan n=29 n=5 3 2. 8 22.86 4 19.5 7 24.14 11 22. 3 2. 7 2. 2 9.52 8 27.59 1 2. 3 2. 4 11.43 3 14.29 4 13.79 7 14. Changes in medication Sleep problems (n=34) Arthritis Arrhythmias Hypertension Hyperkalaemia (n=5) n=5 Participant had a change in medication because of side effects/better to tolerate Participant had a change in medication (Change dose/titrating) Participant describes change in medication not being explained n= % 6 17.65 4 16.67 7 29.17 4 16.67. 11 22. 7 2.59 6 25. 5 2.83 6 25.. 1 2. 6 17.65 6 25. 5 2.83 4 16.67 1 2. 7 14. 25 2 15 1 5 Participant had a change in medication Participant had a change in medication because of side effects/better to tolerate (Change dose/titrating) Participant describes change in medication not being explained Figure 5.6: Changes in medication (% of all participants)

Adherence to medications Participants were asked how long they stick with a therapy before they think it might not be working or give up on it. 2 participants (4.%) 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: Well if I get side effects from it I usually contact the Doctor and say this is what's happening and it's either up to him to say, "Well battle on a bit longer 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 it. If I feel it's not doing me any good I wouldn't just stop it without Doctors' permission. [Participant 5] I would usually stick with it until at least my next appointment, so that I can tell him, you know, "This is what's been happening. Do we think that it's a good idea?" Unless it was something like emergency or that was on the "See a doctor if it's these things," then I would take myself up to emergency. I wouldn't even bother with my GP.. [Participant 18] It depends. If it's something that a specialist has 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 discuss it with them. [Participant 48] There were ten participants (2.%) 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: My theory is I give it a month minimum. Can't sort of take one thing one day and say oh well it didn't work. You've got to give it a few weeks. I've noticed with any medications I go on, it will take at least a week to two weeks before you notice anything different. Depending on what you really take. I mean some of them will be instant. Basically, I give everything a month and see how it goes. [Participant 2] I'd probably give it a fair go, so maybe a month, as a guess, depends on how serious the side effects were I guess, but if they were fairly mild I would stick with it, until I thought "No no no, it's really not working." So I'd give it a fair go, yeah. [Participant 15] I'd say usually I try to give it about four or five weeks. If I have side effects to it or not necessarily side effects but just adverse effects, I will generally, that'll be shorter. But yeah, as long as things don't get worse, I'll give it a good five or so weeks. [Participant 32] 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 4.% in the general cohort). Table 5.7: How long patients stick to a therapy How long patients stick with a new therapy As long as prescribed in consultation with clinician - stick with it 1 Month 3 months Class I/Class II n=15 Class III/Class IV n=35 Regional/Rural n=21 Metropolitan n=29 n=5 5 33.33 15 42.86 8 38.1 12 41.38 2 4. 4 26.67 6 17.14 4 19.5 6 2.69 1 2. 2 13.33 3 8.57 2 9.52 3 1.34 5 1. How long patients stick with a new therapy Sleep problems (n=34) Arthritis Arrhythmias Hypertension Hyperkalaemia (n=5) n=5 n= % As long as prescribed in consultation 14 41.18 9 37.5 11 45.83 7 29.17 2 4. 2 4. with clinician - stick with it 1 Month 9 26.47 8 33.33 6 25. 8 33.33 1 2. 1 2. 3 months 2 5.88 2 8.33 1 4.17 4 16.67 1 2. 5 1.

45 4 35 3 25 2 15 1 5 As long as prescribed in consultation with clinician - stick with it 1 Month 3 months Figure 5.7: How long patients stick to a therapy (% of all participants) Impact of treatment 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 (n=12; 24.%), maintaining heart rhythm/not having palpitations (n=11; 22.%) and having more energy/less fatigue (n=11; 22.%). Participants that described needed to have improvements in general well-being so that they can function and achieve everyday tasks: Generally I'm just looking to feel better. I guess it depends on what it is. I mean if it's something that affects my appearance I guess I'd want it to stop doing that and maybe I'll feel more comfortable in myself. If it's something that affects my energy, I'll want to see improvements in my energy levels. It doesn't have to be you know, like a full 18, but just seeing some level of improvement so that I can do the things I need to do. [Participant 32] I suppose, that you can get up and do normal things. That you're back to, where you can get up and go for a walk for half and hour and come home. Just your day to day routine. So you can get up and take the kids to school and you can get up and go to work and come home, that sort of thing. [Participant 37] I guess I would have to say how I felt. If the treatment worked, then I could return to a sort of normal life. As normal as I could achieve at that time. And to be able to look after my kids and to be able to do the things I enjoy. That would probably be, yeah that would be it. [Participant 46] As noted, there were 11 participants (22.%) that described needing to have more energy or less fatigue in order to feel like a treatment is working. Participants spoke about the feeling of having more confidence or the feeling of achievement when their energy levels improve: Well I started to get some energy back. I started to breathe a bit easier and you know when that happens well you start to feel a bit better in yourself don't you? Yes, yes it was a long road back, it really was many, many years, it took many, many years. It wasn't something that happened in weeks or months, it took years, yes. [Participant 5] For me, it's an energy thing. If I can feel my energy is better, then I know it's the right thing to be doing. If I find that I'm losing energy, then I find that then I'd be the one to go, "No, look, I don't see this is gonna work for me because I'm losing power, not gaining power." [Participant 16] Yeah, actually I remember thinking when I changed to the Verapamil that time, I remember feeling like I had, had a successful day with the Verapamil because I'd got through the day without having a nap. That was like a little milestone for me. Nowadays I very rarely have a nap during the day now, unless I've been doing a lot of physical activity. Nowadays a successful day is if I've got energy all day. A successful treatment is that I feel good all day long. [Participant 33]

Table 5.8: What needs to change to know a treatment has worked What needs to change to know a treatment has worked Class I/Class II n=15 Class III/Class IV n=35 Regional/Rural n=21 Metropolitan n=29 n=5 General well-being and functioning 3 2. 9 25.71 5 23.81 7 24.14 12 24. Maintaining heart rhythm/no 4 26.67 7 2. 4 19.5 7 24.14 11 22. palpitations More energy/less fatigue 4 26.67 7 2. 6 28.57 5 17.24 11 22. Breathing improved 1 6.67 4 11.43 2 9.52 3 1.34 5 1. Clinical tests that demonstrate improvement 1 6.67 4 11.43. 5 17.24 5 1. What needs to change to know a treatment has worked Sleep problems (n=34) Arthritis Arrhythmias Hypertension Hyperkalaemia (n=5) n=5 n= % General well-being and functioning 8 23.53 6 25. 6 25. 1 41.67 1 2. 12 24. Maintaining heart rhythm/no 8 23.53 9 37.5 6 25. 6 25. 1 2. 11 22. palpitations More energy/less fatigue 8 23.53 6 25. 7 29.17 3 12.5 1 2. 11 22. Breathing improved 4 11.76 3 12.5 4 16.67 2 8.33 1 2. 5 1. Clinical tests that demonstrate improvement 2 5.88 1 4.17 1 4.17 1 4.17. 5 1. 3 25 2 15 1 5 General well-being and functioning Maintaining rhythm/no palpitations More energy/less fatigue Breathing improved Clinical tests that demonstrate improvement Figure 5.8: What needs to change to know a treatment has worked Use of 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 Q1 (n=25; 5.%). There were 16 participants (32.%) 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: No I don t touch them. Because then I don t understand the ramifications and what are their complications are.. [Participant 3] I really haven't, no. Yeah, I'm not sure, a lot of them. I tend to take notice of what the GP or the cardiologist says. I'm not really much a believer in these witch doctors. [Participant 4] No. I'm very careful. I'm too scared to take anything like natural medicine and things like that, because they can affect the long QT as well, some of them. I'm very careful, I don't take anything that my doctor doesn't prescribe. I complain to him. [Participant 42]

Table 5.9: Use of complementary therapies Use of complementary therapies Participant describes using vitamins/supplements Participant describes not using complementary therapies Participant describes taking up exercise Class I/Class II n=15 Class III/Class IV n=35 Regional/Rural n=21 Metropolitan n=29 n=5 6 4. 19 54.29 9 42.86 16 55.17 25 5. 5 33.33 11 31.43 7 33.33 9 31.3 16 32. 4 26.67 2 5.71 2 9.52 4 13.79 6 12. Use of complementary therapies Sleep problems (n=34) Arthritis Arrhythmias Hypertension Hyperkalaemia (n=5) n=5 Participant describes using vitamins/supplements Participant describes not using complementary therapies Participant describes taking up exercise n= % 16 47.6 14 58.33 14 58.33 13 54.17 2 4. 25 5. 11 32.35 6 25. 6 25. 8 33.33 2 4. 16 32. 5 14.71 4 16.67 3 12.5 4 16.67 1 2. 6 12. 6 5 4 3 2 1 Participant describes using vitamins/supplements Participant describes not using complementary therapies Participant describes taking up exercise Figure 5.9: Use of complementary therapies (% of all participants) Service provision and affordability Details about the healthcare system were participants were treated for CHF and financial complications from treatment are listed in Table 5.1. The majority of participants were treated for CHF in the public healthcare system (n=35, 7.%), most were treated as a public patient (n=27, 54.%), and had health insurance (n=29, 58.%). The majority of patients never had to cancel healthcare appointments (n=37, 74.%), and they were never unable to afford essential prescriptions (n=38, 76.%). However, half of the participants (n=25, 28.%) 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, 3.%) and changes in employment status resulting in lost income (n=31, 62.%).

Table 5.1: Service provision and affordability Private health insurance N=5 % Yes 29 58. No 21 42. Treated as public or private patient N=5 % Equally public and private 9 18. Private 14 28. Public 27 54. Primary hospital system treated in N=5 % Both public and private 4 8. Private 11 22. Public 35 7. Had to delay or cancel healthcare appointments due to affordability N=5 % Never 37 74. Rarely 7 14. Sometimes 5 1. Often 1 2. Unable to fill prescription due to cost N=5 % Never 38 76 Rarely 7 14 Sometimes 5 1 Often Difficult to pay for basic needs as a result of CHF diagnosis N=5 % Never 25 5 Rarely 11 22 Sometimes 13 26 Often 1 2 Had to pay for additional carers due to CHF N=5 % Yes 15 3. No 35 7. Change in employment due to CHF (can choose more than one option) N=5 % I have had to quit my job 23 46. I have reduced the number of hours i work 6 12. I have taken leave with pay 7 14. I have taken leave without pay 2 4. I was retired or did not have a job when diagnosed 4 8. My work status has not changed 6 12. I have accessed my super 6 12. Change in carer job status (can choose more than one option) N=5 % My carer had to quit their job 2 4. My carer has reduced the number of hours they work 7 14. My carer has taken leave with pay 6 12. My carer has taken leave without pay 5 1. My carer was retired or did not have a job when diagnosed 5 1. My carers work status has not changed 29 58. Out of pocket expenses burden N=5 % Extremely significant 5 1. Moderately significant 5 1. Somewhat significant 18 36. Slightly significant 8 16. Not significant at all 14 28. Section 5