Section Section Treatment and health service provision Chronic Kidney Disease 0 Australian PEEK Study
Section Section : Experience of treatment Summary Treatments experienced The most commonly used treatment reported were ACE inhibitors (n=;.%), followed by vitamin D (n=;.%), statins (n=0,.%) and hospital based haemodialysis (n=;.%). The least reported were Continuous Ambulatory Peritoneal Dialysis (CAPD) (n=;.00%) and home-based haemodialysis (n=;.%). Quality of life while using treatments As a follow-up question (within the questionnaire), participants were asked to rate their quality of life on a scale of to, while using each specific treatment (with being Life was very distressing and being Life was great ). All forms of dialysis rated the poorest in relation to quality of life while the treatments that had the least impact on quality of life were ACE inhibitors (mean score.0), vitamin D (mean score.), statins (mean score.0) and beat blockers (mean score.0). Effectiveness of treatments A second follow-up question was asked in relation to how effective the participant felt the treatment was on a scale of to (with being ineffective and being very effective. Three therapies scored an average of.00 in relation to effectiveness including EPO, hospital based haemodialysis and home based haemodialysis. The remaining therapies all scored between.00 and., with the exception of Automated Peritoneal Dialysis which scored an average of.00. Side effects of treatments In relation to side-effects that participants could cope with, there were very few trends within this question as when asked, participants often went straight into discussing the difficult side effects, nevertheless, close to half of the participants (n=0;.%) described being able to cope with all side effects, however this was often followed with a note suggesting that they had no choice but to cope. The main theme in relation to difficult side effects was the psychological stress (n=;.%), noting the relentless nature of the disease (i.e. it is always there). Other side effects that were difficult to cope with were weakness/fatigue (n=;.%) and weight gain and bloating (n=;.%). There were a number of sub-group variations. Participants with stage / disease reported difficulty coping with weakness and fatigue less frequently while participants with stage disease reported this more frequently than the general cohort (.% stage / disease,.00% stage and.% for the general cohort). Stage / disease participants reported difficulties with weight gain/bloating more frequently than the general cohort (.% stage / disease compared to.% in the general cohort). Participants with hyperkalaemia reported difficulties with weight gain/bloating less frequently than the general cohort (.% compared to.% in the general cohort). Changes in medications Participants were asked whether they had ever needed to change medications. The main changes in medication noted were in relation to cardiovascular therapies, particularly blood pressure medications (n=;.%). There were participants (.%) that described a single change in medication for across a range of conditions and (.%) that had not had a change in medication. There were also seven participants (.00%) that described multiple changes in medications. There was one variation in relation to sub-groups. Participants with stage disease reported changes in medication in relation to cardiovascular therapies less frequently than the general cohort (.00% compared to.% in the general cohort). Participants were asked whether their doctor had provided a clear explanation for the reason for any changes in medication. The majority of participants (n=;.%) described changes in medication being explained and being satisfied with the explanation. were also eight participants (.%) that described a change in medication being made at their request, often after conducting research of their own. Chronic Kidney Disease 0 Australian PEEK Study
Section 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. (.%) participants stated that they stick with medications as long as it is prescribed, often noting their trust in their treating clinician. There were ten participants (.%) that stated they adhere to medications as long as they feel they are working, and some participants relied on their regular check-ups and blood tests to determine this. An additional ten participants (.%) said that they maintain the therapy for two to three months to see if it is working and a further ten participants (.%) noted that they use the treatment as long as tolerated, without detriment to their health otherwise. There were a number of sub-group variations. Regional/rural participants reported adhering to medications for - months (.% compared to.0% for metropolitan participants) or as long as tolerated more frequently than metropolitan participants (.% compared to.% for metropolitan participants). There were also no participants with hyperkalaemia that reported adhering to medications for - months. Participants were asked what needed to change for them to feel as though a treatment is working. The most common response was the need to see improvements in clinical tests, particularly blood tests (n=;.%), followed by generally feeling better and being able to do everyday tasks (n=0;.%). Use of complementary therapies Participants were asked whether they had used any complementary therapies. Where complementary therapies were used, these were primarily vitamins and supplements (n=;.%)and massage (including physiotherapy) (n=;.%). Almost half of the participants (n=;.%) stated that they did not use complementary therapies, with many noting that they would not do so without the permission of their treating clinician. There were a number of sub-group variations. Participants with stage disease reported not using complementary therapies less frequently than the general cohort (0.00% compared to.% in the general cohort). They also described accessing massage or physiotherapy more frequently (0.00% compared to.% in the general cohort), while participants with stage / disease reported this less frequently (.% compared to.% in the general cohort). Participants with stage disease also reported diet and lifestyle changes more frequently than the general cohort (0.00% compared to.00% in the general cohort). Service provision and affordability The majority of participants were treated for CKD in the public healthcare system (n=, 0.00%), as a public patient (n=,.%), and had health insurance (n=,.%). The majority of patients never had to cancel healthcare appointments (n=, 0.00%), and they were never unable to afford essential prescriptions (n=,.%). However, over a third of participants (n=,.%) sometimes or often were unable to pay for basic necessities such as housing, food and electricity. Other costs to participants include the need for a carer (n=,.%) and changes in employment status resulting in lost income (n=,.%). Chronic Kidney Disease 0 Australian PEEK Study
Treatments experienced Section Participants were asked in the questionnaire to identify the treatments that they had experienced (excluding surgery). The most commonly used treatment reported were ACE inhibitors (n=;.%), followed by vitamin D (n=;.%), statins (n=0;.%) and hospital based haemodialysis (n=;.%). The least reported were Continuous Ambulatory Peritoneal Dialysis (CAPD) (n=;.00%) and home-based haemodialysis (n=;.%). Table.: Treatments experienced Treatments experienced (n=) by stage of disease Stage / n= ACE inhibitors.% Vitamin D.% Statins.0% Hospital or center based haemodialysis.% Angiotensin II receptor blockers (ARBs).% Diuretics.% Beta blockers.% Phosphate binders.0% Calcium channel blockers.0% EPO.% Automated Peritoneal Dialysis (APD).% Home based haemodialysis.% Continuous Ambulatory Peritoneal Dialysis (CAPD).% Stage n=0 0.00% 0.00%.00%.00%.00% 0.00% 0.00%.00% 0.00% 0.00%.00%.00%.00% Stage / n= 0.%.%.%.%.%.% 0.%.%.%.0% 0.%.%.% n=0.%.% 0.%.%.%.% 0.00% 0.%.% 0.00% 0.00%.%.00% Treatments experienced (n=) comparison with comorbidities Anxiety n= Hyperkalaemia n=0 Hypertension n= Sleep problems n= n=0 ACE inhibitors.% Vitamin D.% Statins.% Hospital or center based haemodialysis.% Angiotensin II receptor blockers (ARBs).% Diuretics.% Beta blockers.% Phosphate binders.% Calcium channel blockers.0% EPO.% Automated Peritoneal Dialysis (APD).% Home based haemodialysis.% Continuous Ambulatory Peritoneal Dialysis (CAPD).%.%.%.%.%.%.%.%.%.%.%.% 0.00%.%.%.%.%.%.0%.%.0%.0%.%.%.%.%.%.%.% 0.00%.%.%.%.%.%.%.0%.%.%.%.%.% 0.%.%.%.% 0.00% 0.%.% 0.00% 0.00%.%.00% Chronic Kidney Disease 0 Australian PEEK Study
Section As a follow-up question (within the questionnaire), participants were asked to rate their quality of life on a scale of to, while using each specific treatment (with being Life was very distressing and being Life was great ). All forms of dialysis rated the poorest in relation to quality of life (see table.) while the treatments that had the least impact on quality of life were ACE inhibitors (mean score.0), vitamin D (mean score.), statins (mean score.0) and beat blockers (mean score.0). Table.: Quality of life while using treatments Treatment (n=) n= Mean QoL Life was very score distressing (Score = ) Life was distressing (Score = ) Life was a little distressing (Score = ) Life was average (Score = ) Life was good (Score = ) Life was very good Life was great (Score = ) (Score = ) n= % n= % n= % n= % n= % n= % n= % ACE inhibitors.0 0 0.00..... 0 0.00 Vitamin D. 0 0.00...... Statins 0.0. 0 0.00. 0.00.. 0 0.00 Beta blockers.0. 0 0.00..0.0. 0 0.00 Angiotensin II. 0 0.00.0.0 0.. 0 0.00 0 0.00 receptor blockers (ARBs) Calcium channel. 0 0.00.... 0 0.00 0 0.00 blockers EPO.. 0 0.00. 0.00.. 0 0.00 Phosphate 0.0.00.00 0.00 0.00.00.00 0 0.00 binders Diuretics. 0 0.00..... 0 0.00 Hospital or center based haemodialysis Home based haemodialysis Continuous Ambulatory Peritoneal Dialysis (CAPD) Automated Peritoneal Dialysis (APD)....... 0 0.00.00.0.00.0 0 0.00.00 0 0.00 0 0.00. 0 0.00.... 0 0.00 0 0.00.. 0.00... 0 0.00 0 0.00 Chronic Kidney Disease 0 Australian PEEK Study
Section.... 0. 0 Figure.: Mean quality of life scores in relation to treatments A second follow-up question was asked in relation to how effective the participant felt the treatment was on a scale of to (with being ineffective and being very effective. Three therapies scored an average of.00 in relation to effectiveness including EPO, hospital based haemodialysis and home based haemodialysis. The remaining therapies all scored between.00 and., with the exception of Automated Peritoneal Dialysis which scored an average of.00. Table.: Effectiveness of treatments Treatment (n=) n= Mean Effectiveness score Ineffective Score = Somewhat effective Score = Moderately effective Score = Effective Score = Very effective Score = n= % n= % n= % n= % n= % EPO.00 0 0.00 0 0.00 0 0.00 0 0.00 0.00 Hospital or center based.00 0 0.00 0 0.00 0 0.00 0 0.00 0.00 haemodialysis Home based.00 0 0.00 0 0.00 0 0.00 0 0.00.0 haemodialysis Diuretics. 0 0.00.0 0 0.00 0 0.00 0.00 Angiotensin II receptor.. 0 0.00 0 0.00 0 0.00. blockers (ARBs) Vitamin D... 0 0.00 0 0.00. Calcium channel blockers. 0 0.00. 0 0.00 0 0.00. Phosphate binders 0.0 0 0.00.00 0 0.00 0 0.00 0.00 Beta blockers... 0 0.00 0 0.00 0. ACE inhibitors... 0 0.00 0 0.00 0. Statins 0... 0 0.00 0 0.00. Continuous Ambulatory Peritoneal Dialysis (CAPD) Automated Peritoneal Dialysis (APD).00.. 0 0.00 0 0.00 0.00.00 0.00 0 0.00 0 0.00 0 0.00 0.00 Chronic Kidney Disease 0 Australian PEEK Study
Section 0 EPO Hospital or Home based center based haemodialysis haemodialysis Diuretics Angiotensin II receptor blockers (ARBs) Vitamin D Calcium channel blockers Figure.: Mean effectiveness scores in relation to treatments Phosphate binders Beta blockers ACE inhibitors Statins Continuous Ambulatory Peritoneal Dialysis (CAPD) Automated Peritoneal Dialysis (APD) 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. There were very few trends within this question as when asked, participants often went straight into discussing the difficult side effects, nevertheless, close to half of the participants (n=0;.%) described being able to cope with all side effects, however this was often followed with a note suggesting that they had no choice but to cope. There was one sub-group variation. Participants with stage / disease described being able to cope will all side effects/not having a choice more frequently than participants with stage / or stage disease (.% compared with.0% stage / and 0.00% stage disease) I suppose you've got to cope with everything don't you, you do what you're told or you die. [Participant ] I've been able to cope with most of it. I mean, I haven't really got much choice. [Participant 0] None of them really. Because it's just... I've managed them, that's probably about as good as it gets. [Participant ] Chronic Kidney Disease 0 Australian PEEK Study
Section Table.: Side effects that participants could cope with Participant describes being able to cope with (n=) by stage of disease Stage / n= Stage n=0 Stage / n= n=0 All of the side effects/not much choice but to cope.0% 0.00%.% 0.% Weight gain and bloating.0%.00%.%.% Participant describes being able to cope with (n=) comparison with comorbidities Anxiety n= Hyperkalaemia n=0 Hypertension n= Sleep problems n= n=0 All of the side effects/not much choice but to cope.% 0.00%.%.% 0.% Weight gain and bloating.%.%.%.%.% Participant describes being able to cope with (n=) comparison with location Regional/Rural n= Metropolitan n= n=0 All of the side effects/not much choice but to cope.% Weight gain and bloating.%.%.% 0.%.% Weight gain and bloating All of the side effects/not much choice but to cope 0 0 0 0 Figure.: Side effects that participants could cope with (% of all participants) As noted, participants in this study had stronger opinions about the side effects that they found difficult (compared with those that they could cope with). The main theme in relation to difficult side effects was the psychological stress (n=;.%), noting the relentless nature of the disease (i.e. it is always there): Psychological distress we found very hard, very hard indeed. As far as the hemodialysis, I can handle that quite well because the social part of it is quite good. Needs a bit of improvement, different personalities et cetera, et cetera, in the unit. There was a lot of tears and sobbing, et cetera, et cetera. I can't handle this anymore sort of statements. Then you go see Professor NAME and cry on his shoulder more or less. [Participant ] I guess. Just that constant fear of not going backwards and not... and that constant worry of, you know... of that thought of losing that... the kidney function that I have. I guess that's probably really the only... is the only negative, I'd say. Is just that constant worry. You know, I don't want to end up on dialysis so... yeah. [Participant ] I think it was the mental side effects, the mental like... There's something wrong, what is wrong? Where is this coming from? So, it was all that. It was the unknowing, that side effect...well, all of them, but your mind gets sort around it if you've got pain hours a day. [Participant ] Chronic Kidney Disease 0 Australian PEEK Study
Section Other side effects that were difficult to cope with were weakness/fatigue (n=;.%) and weight gain and bloating (n=;.%). There were no significant variation between male and female responses and other demographic variables. There were a number of sub-group variations. Participants with stage / disease reported difficulty coping with weakness and fatigue less frequently while participants with stage disease reported this more frequently than the general cohort (.% stage / disease,.00% stage and.% for stage /). Stage / disease participants reported difficulties with weight gain/bloating more frequently than the general cohort (.% stage / disease compared to.% in the general cohort). Participants with hyperkalaemia reported difficulties with weight gain/bloating less frequently than the general cohort (.% compared to.% in the general cohort). Table.: Side effects that participants found difficult to cope with Participant describes difficult side effects (n=) by stage of disease Stage / n= Stage n=0 Stage / n= n=0 Psychological distress, anger and relentless nature of kidney disease (always there).% Weakness/Fatigue/Insomnia.% Weight gain/bloating.% None very difficult.% 0.00%.00%.00%.00%.%.%.%.%.%.%.%.% Participant describes difficult side effects (n=) comparison with comorbidities Anxiety n= Hyperkalaemia n=0 Hyperension n= Sleep problems n= n=0 Psychological distress, anger and relentless nature of kidney disease (always there).%.%.0%.0%.% Weakness/Fatigue/Insomnia Weight gain/bloating.%.%.%.%.%.%.%.%.%.% None very difficult.%.%.%.%.% Participant describes difficult side effects (n=) comparison with location Regional/Rural n= Metropolitan n= n=0 Psychological distress, anger and relentless nature of kidney disease (always there) Weakness/Fatigue/Insomnia Weight gain/bloating.%.%.% None very difficult.%.0%.0%.%.0%.%.%.%.% 0 0 Psychological distress, anger and relentless nature of kidney disease (always there) Weakness/Fatigue/Insomnia Weight gain/bloating None very difficult Figure.: Side effects that participants found difficult to cope with (% of all participants) Chronic Kidney Disease 0 Australian PEEK Study
Changes in medication Participants were asked whether they had ever needed to change medications. The main changes in medication noted were in relation to cardiovascular therapies, particularly blood pressure medications (n=;.%). There were participants (.%) that described a single change in medication for across a range of conditions and (.%) that had not had a change in medication. There were also seven participants (.00%) that described multiple changes in medications. The following quotes are in relation to changes in cardiovascular medications: Yes they are good at explaining... Okay. So the blood pressure medication has been increased in the past month or so. That seems to be has improved... My blood pressure has come down so that's seems to have helped it. That's the only thing I've noticed, that the doctors commented on. [Participant ] Table.: Changes in medication Section Yes. I think the Coversyl changed from... dosage just changed slightly, that was all. The blood pressure was dropping a little bit too much. I was getting a bit, sort of light headed just change the dosage a bit. NAME, the nephrologist, and the doctors sort of worked together on those things and NAME said you're on the best thing for it. [Participant ] Yeah, the doctor tried me on... I can't remember the name of it. It was another blood pressure med that diabetics use, so I tried that.and then I went back to him and said I don't want to take anything anymore, so... Yeah, but he swapped that over for me He always lets me know what we are up to. [Participant ] There was one variation in relation to sub-groups. Participants with stage disease reported changes in medication in relation to cardiovascular therapies less frequently than the general cohort (.00% compared to.% in the general cohort). Changes in medication (n=) by stage of disease Stage / n= Stage n=0 Stage / n= n=0 Participant had a change in medication (Cardiovascular medications/blood pressure).% Participant had a change in medication (Non specific/other) 0.% Participant had not had a change in medication.0% Participant had a change in medication (Many).% Participant had a change in medication (Change dose).%.00% 0.00% 0.00%.00%.00%.%.%.0%.%.%.%.%.%.00%.% Changes in medication (n=) comparison with comorbidities Participant had a change in medication (Cardiovascular medications/blood pressure) Anxiety n=.% Hyperkalaemia n=0.% Hypertension n=.% Sleep problems n= n=0.%.% Participant had a change in medication (Non specific/other).0%.%.0%.%.% Participant had not had a change in medication.%.%.0%.%.% Participant had a change in medication (Many).%.%.%.%.00% Participant had a change in medication (Change dose).%.00%.%.%.% Changes in medication (n=) comparison with location Participant had a change in medication (Cardiovascular medications/blood pressure) Regional/Rural n=.% Metropolitan n= 0.% n=0.% Participant had a change in medication (Non specific/other).% Participant had not had a change in medication. % Participant had a change in medication (Many).% Participant had a change in medication (Change dose).0% 0.%.%.0%.0%.%.%.00%.% Chronic Kidney Disease 0 Australian PEEK Study
Section Participant had a change in medication (Change dose) Participant had a change in medication (Many) Participant had not had a change in medication Participant had a change in medication (Non specific/other) Participant had a change in medication (Cardiovascular medications/blood pressure) Figure.: Changes in medication (% of all participants) 0 0 0 As a follow-up question, participants were asked whether their doctor had provided a clear explanation for the reason for any changes in medication. The majority of participants (n=;.%) described changes in medication being explained and being satisfied with the explanation: Yeah, they always go through it, whether I listen is another story. [Participant ] Yes, yeah I did, my nephrologist I thought was really good and he did explain things and didn't treat me like an idiot, but it was complex getting it all right, but I sort of understood why all the changes. [Participant ] Yes, absolutely. It was normally just because of the high blood levels of something or other. And or lower blood levels needed to be adjusted. [Participant ] Yep. Yep, I've been very well informed about all that, a whole different regime, and that's still... I'm still seeing him, and I'm still doing weekly blood tests and seeing the nephrologist every fortnight, and we're still changing the mix of medications, just to try and get everything stabilised, and yes, no, I was informed, I think very well, why things are being changed, and what they're doing. [Participant ] There were also eight participants (.%) that described a change in medication being made at their request, often after conducting research of their own: No. I suggested it to him because I was having quite a stressful time with other things going on. His staff... I was taking my blood pressure and noticed it was going up. I figured the best thing to do was actually try to get it down and try not to damage my kidneys any further. [Participant ] It was driven by me, I would just take to telling her at the next appointment after two weeks, I had to stop taking the last one because I couldn't tolerate it. And the she'd say, "Oh, alright. Well, let's try this class of blood pressure medication. It's a different class than the other one, it operates a bit differently and maybe you'll be able to tolerate this one." So then we'd trial that one. At that point my appointments were three monthly. So it would be every three months I would be trying a new one. When I saw her. [Participant ] No, because I'm the one doing the research. I'm in the one that's in control of it. He might have made a suggestion, and I have to agree to it or not. [Participant 0] Chronic Kidney Disease 0 Australian PEEK Study
Section Table.: Explanations for changes in medication. Explanation of changes in medication (n=) by stage of disease Stage / n= Participant describes change in medication being explained/satisfied with explanation.% Participant describes change in medication not being explained/participant describes change in medication due to their request.0% Stage n=0.00%.00% Stage / n=.%.% n=0.%.% Explanation of changes in medication (n=) comparison with comorbidities Anxiety n= Hyperkalaemia n=0 Hypertension n= Sleep problems n= n=0 Participant describes change in medication being explained/satisfied with explanation Participant describes change in medication not being explained/participant describes change in medication due to their request.%.% 0.00%.%.0%.%.%.%.%.% Explanation of changes in medication (n=) comparison with location Participant describes change in medication being explained/satisfied with explanation Participant describes change in medication not being explained/participant describes change in medication due to their request Regional/Rural n=.%.% Metropolitan n=.%.% n=0.%.% 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. participants (.%) stated that they stick with medications as long as it is prescribed, often noting their trust in their treating clinician: Well the medication I just stick to because it's all prescribed by the Doctor. So that one I don't miss out, I don't skimp I just do it daily. [Participant ] Yeah. That's not a decision I would make on my own if it's to do with my treatment. I'm not just gonna give up on something without getting professional opinion from Yeah, from my renal team. There's no way I would just stop taking something just because I think it's not working. [Participant ] Look, I would probably... I'm the sort of person, I guess, I would probably keep taking until I was told not to. Yeah. Very obedient. [Participant ] There were ten participants (.%) that stated they adhere to medications as long as they feel they are working, and some participants relied on their regular check-ups and blood tests to determine this: Well, I'd follow... I just did what I was told, very compliant. It's all in response... they are basically aiming for biochemical markers that they're trying hit, so we had targets that they were trying to maintain, and I'd get the results of all my blood tests, and a lot of this stuff I was monitoring myself. [Participant ] Probably when I had the prints it wasn't working. So say a blood test or something like that. I don't know. [Participant ] I guess for me, it would be a case of seeing the results from tests if it's not working and obviously also from my queues from my nephrologist that is if it's not working then yes, we definitely want to try something else. [Participant ] An additional ten participants (.%) said that they maintain the therapy for two to three months to see if it is working (there were no participants with hyperkalaemia that noted this) and a further ten participants (.%) noted that they use the treatment as long as tolerated, without detriment to their health otherwise: Well, if I don't think it's working properly, if it's... It's hard to say I suppose. I don't know. It depends how long it takes to find out if it works or not, I guess. I don't know. It's a hard one to answer, but mostly as long as I can tolerate it it's fine. [Participant ] I've just stuck with everything that I've had to do. But I tend, I tend, if I'm told to do something, I'd probably go longer with what's anticipated in a couple of things in my lifetime... If this is an opportunity, it might make a difference. We'll just push through and see whether we can get well. [Participant ] I wouldn't stop things because I didn't feel like it was working, because I know things can work when you don't feel it working. It would mainly... Yeah, I would never stop because of that. Mainly, just if it made me physically feel not very well for an extended period of time. Yeah. [Participant ] Chronic Kidney Disease 0 Australian PEEK Study
Section Table.: How long patients stick to a therapy How long patients stick with a new therapy (n=) by stage of disease Stage / n= Stage n=0 Stage / n= n=0 As long as prescribed.0% 0.00%.0.% As long as/if its working and there is a benefit (e.g. test results).%.00%.%.% - months.%.00%.%.% As long as tolerated 0.%.00%.%.% - weeks.%.00%.%.% How long patients stick with a new therapy (n=) comparison with comorbidities Anxiety n= Hyperkalaemia n=0 Hypertension n= Sleep problems n= n=0 As long as prescribed.% 0.00%.0%.%.% As long as/if its working and there is a benefit (e.g. test results).% 0.00%.0%.%.% - months.% 0 0.00%.%.%.% As long as tolerated.%.%.%.%.% - weeks.%.%.%.%.% How long patients stick with a new therapy (n=) comparison with location Regional/Rural n= Metropolitan n= n=0 As long as prescribed.% As long as/if its working and there is a benefit (e.g. test results).% - months.% As long as tolerated.% - weeks.%.0%.%.0%.%.%.%.%.%.%.% - weeks As long as tolerated - months As long as/if its working and there is a benefit (e.g. test results) As long as prescribed 0 0 Figure.: How long patients stick to a therapy (% of all participants) Chronic Kidney Disease 0 Australian PEEK Study
There were a number of sub-group variations. Regional/rural participants reported adhering to medications for - months (.% compared to.0% for metropolitan participants) or as long as tolerated more frequently than metropolitan participants (.% compared to.% for metropolitan participants). There were also no participants with hyperkalaemia that reported adhering to medications for - months. What needs to change to feel like a treatment is working Participants were asked what needed to change for them to feel as though a treatment is working. The most common response was the need to see improvements in clinical tests, particularly blood tests (n=;.%): I've always had medical things that blood test results can kind of tell you where you're sitting so if I thought that my blood had increased in ways that it needed to, or decreased in ways that it needed to, I probably would have stuck to things, I'm a bit of a... bound by that. [Participant ] Table.: What needs to change to feel like a treatment is working Section If the treatment was prescribed regarding my blood test, if they looked at my blood test and noticed something, I'd want to see the change in my blood test. [Participant ] Well, I suppose for me to feel well. And if I'm getting lab results back showing that my kidney function has improved, or at least stayed the same. [Participant ] The other key theme was that participants generally needed to feel better and be able to do everyday tasks (n=0;.%). Obviously feel better, and be able to at least do some of my normal life duties. [Participant ] Just overall kind of quality of life and general wellbeing. I just want to feel like I can do things, I can get on with life without feeling lethargic or tired or in pain. So, if I feel there's a difference then I know that it's working. If I'm not feeling anything or if I'm feeling worse, it's not. [Participant ] Probably just overall feelings, yeah, wellness and stuff like that. General well-being. [Participant 0] What needs to change for patients to feel like treatment is working (n=) by stage of disease Stage / n= Stage n=0 Stage / n= n=0 Participants describes seeing the result of clinical tests.0% Participant describes needing to feel better generally and having energy to do everyday tasks.00%.00%.00%.0% /%.% 0.% What needs to change for patients to feel like treatment is working (n=) comparison with comorbidities Anxiety n= Hyperkalaemia n=0 Hypertension n= Sleep problems n= n=0 Participants describes seeing the result of clinical tests /% 0.00%.%.%.% Participant describes needing to feel better generally and having energy to do everyday tasks /%.%.%.% 0.% What needs to change for patients to feel like treatment is working (n=) comparison with location Regional/Rural n= Participants describes seeing the result of clinical tests 0.% Participant describes needing to feel better generally and having energy to do everyday tasks.% Metropolitan n=.%.% n=0.% 0.% Chronic Kidney Disease 0 Australian PEEK Study
Section Use of complementary therapies Participants were asked whether they had used any complementary therapies. Where complementary therapies were used, these were primarily vitamins and supplements (n=;.%)and massage (including physiotherapy) (n=;.%). Almost half of the participants (n=; %) stated that they did not use complementary therapies, with many noting that they would not do so without the permission of their treating clinician: No, because... if you're thinking about alternative medicines, you have to check all that out with a doctor because whatever you take... you have to be careful with the kidneys. [Participant ] I don't do that. I don't do any of that. I don't take any other dietary things, or... what do you call them? Alternative therapies. I don't do any of that, because I know that some of those sort of things can have adverse effects on the medications I'm actually on. Anything like that that I'm thinking about doing, I check with the doctor first. Yeah, don't do it. [Participant ] I don't. I don't do anything like that because I find it difficult, like with concerns about the complimentary medicine, then going back to talk to your specialist to make sure it's not going to effect your mainstream medicine, so to be honest I've avoided it because of that. I don't live close to my specialist. I see them every three months and it's not just like I can just pick up the phone and go. So regular medicine worked, so I'll put my faith in that at this point. [Participant ] Table.: Use of complementary therapies Use of complementary therapies (n=) by stage of disease Stage / n= Stage n=0 Stage / n= n=0 Participant describes not using complementary therapies.% Participant describes using vitamins/supplements.% Participant describes massage/physiotherapy.% Participant describes diet/lifestyle changes 0 0.00% Participant describes taking up exercise 0 0.00% 0.00% 0.00% 0.00% 0.00%.00%.%.%.%.%.%.%.%.%.00%.% Use of complementary therapies (n=) comparison with comorbidities Anxiety n= Hyperkalaemia n=0 Hypertension n= Sleep problems n= n=0 Participant describes not using complementary therapies.%.% 0.%.%.% Participant describes using vitamins/supplements.%.00%.%.%.% Participant describes massage/physiotherapy.%.00%.%.%.% Participant describes diet/lifestyle changes.%.00%.%.%.00% Participant describes taking up exercise.%.%.%.%.% Use of complementary therapies (n=) comparison with location Regional/Rural n= Participant describes not using complementary therapies.% Participant describes using vitamins/supplements.% Participant describes massage/physiotherapy.% Participant describes diet/lifestyle changes.% Participant describes taking up exercise.% Metropolitan n=.%.0%.%.%.% n=0.%.%.%.00%.% Chronic Kidney Disease 0 Australian PEEK Study
Section 0 0 0 0 0 Participant describes not using complementary therapies Participant describes using vitamins/supplements Participant describes massage/physiotherapy Participant describes diet/lifestyle changes Participant describes taking up exercise Figure.: Use of complementary therapies (% of all participants) There were a number of sub-group variations. Participants with stage disease reported not using complementary therapies less frequently than the general cohort (0.00% compared to.% in the general cohort). They also described accessing massage or physiotherapy more frequently (0.00% compared to.% in the general cohort), while participants with stage / disease reported this less frequently (.% compared to.% in the general cohort). Participants with stage disease also reported diet and lifestyle changes more frequently than the general cohort (0.00% compared to 0.00% in the general cohort). Service provision and affordability Details about the healthcare system were participants were treated for CKD and financial complications from treatment are listed in Table.. The majority of participants were treated for CKD in the public healthcare system (n=, 0.00%), as a public patient (n=,.%), in the public hospital system (n=,.%) and had health insurance (n=,.%). The majority of patients never had to cancel healthcare appointments (n=, 0.00%), and they were never unable to afford essential prescriptions (n=,.%). However, over a third of participants (n=,.%) sometimes or often were unable to pay for basic necessities such as housing, food and electricity. Other costs to participants include the need for a carer (n=,.%) and changes in employment status resulting in lost income (n=,.%). Chronic Kidney Disease 0 Australian PEEK Study
Table.: Service provision and affordability Private health insurance N= % Yes. No. Treated as public or private patient N=0 % Equally public and private. Private. Public. Primary hospital system treated in N=0 % Both public and private. Private. Public 0.00 Had to delay or cancel healthcare appointments dues to N=0 % affordability Never 0.00 Rarely. Sometimes. Often. Unable to fill prescription due to cost N=0 % Never. Rarely. Sometimes.00 Often. Unable to pay for basic needs as a result of CKD diagnosis % Never. Rarely. Sometimes 0.00 Often. Had to pay for additional carers due to CKD N= % Yes. No. Section Change in employment due to CKD N=0 % I have had to quit my job. I have reduced the number of hours I work. I have taken leave with pay. I have taken leave without pay. I was retired or did not have a job when diagnosed. My work status has not changed 0.00 I have accessed my super.00 Chronic Kidney Disease 0 Australian PEEK Study
Change in carer job status N= % My carer had to quit their job. My carer has reduced the number of hours they work. My carer has taken leave with pay. My carer has taken leave without pay. My carer was retired or did not have a job when diagnosed. My carers work status has not changed. My carer has accessed their super 0 0.00 Out of pocket expenses burden Extremely significant. Moderately significant. Somewhat significant 0. Slightly significant. Not significant at all. Section Chronic Kidney Disease 0 Australian PEEK Study