Section 4 Decision-making

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1 Decision-making

2 : Decision-making 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 medications (anti-hypertensive drugs, steroids, antibiotics) as well as diet (n=;.%). There were participants (.%) that described the initial discussion focusing on dialysis through to transplant. In addition to specific treatments discuss, there were also participants (.%) that felt that there was little or no discussion about treatments at diagnosis. There were a number of reasons for this including the need for urgent care and little time to discuss options or in the case of early stage disease, no active treatments being needed. Clinical trials Participants were asked whether they had had a discussion about clinical trials. There were no significant trends in relation to stage of disease or co-morbidities. The majority of participants (n=;.%) noted that they had not discussed being on a clinical trial, while (.%) had discussed clinical trials. There were 0 participants that had participated in a clinical trial or clinical research study. There were two sub-group variations in relation to conversations about clinical trials. Regional/Rural participants described clinical trials not being discussed more frequently than metropolitan participants (.% compared to.% for metropolitan participants). Likewise, they described clinical trials being discussed less frequently than metropolitan participants (.% compared to.% for metropolitan participants). Participants were asked whether they would be interested in clinical trials in the future. Most participants (n=0;.%) stated that they would be interested in a clinical trial, with eight (.%) that were not interested and 0 (.%) that were possibly interested. Decision-making Participants were asked who was involved in decisions made about treatment and care. Almost half (n=;.%) of the participants noted that decision-making was primarily between themselves, family (in some cases close friends) and their treating physician. The remaining themes were variations of this combination with (.%) participants describing decision-making between themselves and family and (0.00%) participants describing decision-making between themselves and their treating physician. There were a number of sub-group variations. Participants with stage disease described decision-making between themselves and their clinician more frequently than participants with stage / or stage / disease (0.00% compared with.% stage / and.% stage / disease). Participants with anxiety and hyperkalaemia described decision-making between themselves and family more frequently than the general cohort (.% for anxiety and.% for hyperkalaemia participants compared to.% within the general cohort). Regional/rural participants described decision-making between themselves, family and their clinician more frequently than metropolitan participants (.% compared to.% for metropolitan participants). Participants were asked about the things that they take into consideration when making decisions about treatment. The majority of participants and most common theme identified was taking into account the impact on everyday living and ability to live a normal life (n=;.%).

3 There were a number of sub-group variations. Participants with stage disease described taking into account the impact on everyday living less frequently than the general cohort (.00% compared to.% in the general cohort). Participants with stage / disease described balancing side effects with outcomes less frequently than the general cohort (.% compared to 0.00% in the general cohort) while participants with stage disease described this more frequently (0.00% compared to 0.00% in the general cohort). Participants with stage disease also described the impact on their family less frequently than the general cohort (.00% compared to.% in the general cohort). Rural/regional participants described taking into account side effects balanced with outcome less frequently than metropolitan participants (.% compared to.% for metropolitan participants). They also described taking into account the likely success rate less frequently than metropolitan participants (.% compared to.% for metropolitan participants). However, they described impact on personal finance more frequently than metropolitan participants (.% compared to.% for metropolitan participants). In the final question about decision-making, participants were asked whether they felt the way they made decisions had changed over time since they were diagnosed. There was a relatively close response to this question with (.%) participants responding that they had changed the way they make decisions and (.%) that the way they make decisions has stayed the same. For those who had changed the way they make decisions, 0 participants (.%) noted that this was in relation to having a more informed process, assertive and considered process. There were a number of sub-group variations. Regional/rural participants described having the same approach to decision-making more frequently than metropolitan participants (.% compared to.% for metropolitan participants). Participants with stage / and stage / disease described being more assertive in their decision-making less frequently than participants with stage disease (0.% stage /,.% stage / disease compared to.00% for stage participants). Stage participants also described making decisions in the same way more frequently (.0% stage /,.% stage / disease compared to.00% for stage participants). Participants with anxiety described being more informed and assertive more frequently than the general cohort (.% compared to.% in the general cohort). They also described having the same approach to decision-making less frequently than the general cohort (.0% compared to.% in the general cohort).

4 Discussions about treatment 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 medications (anti-hypertensive drugs, steroids, antibiotics) as well as diet (n=;.%). There were participants (.%) across all disease stages, that described the initial discussion focusing on dialysis through to transplant. In addition to specific treatments discuss, there were also participants (.%) that felt that there was little or no discussion about treatments at diagnosis. There were a number of reasons for this including the need for urgent care and little time to discuss options or in the case of early stage disease, no active treatments being needed. There were however descriptions where participants felt like there were very few options available: When I was first diagnosed, a treatment plan was pretty much non-existent. No treatment was offered to me because I was stage one at the time right up until I was about stage three or four, it was simply just basically maintain a healthy diet and exercise. Very little was offered. [Participant ] Not a lot. It all happened really quick, nothing was really discussed, it was more "You need this right now." Once I was first diagnosed, I was able to regain most of my kidney function, get up to about 0% kidney function back, but then I was like that for about a year before I had to start dialysis, it wasn't until I had a second flare when I had to go on dialysis, by that point I didn't really have much of a discussion about what the options were, because I needed to go on dialysis straight away at that point. So not a lot of discussion. [Participant ] Not a lot. Not a lot at all. I did gain a lot of knowledge from my work and from the doctors I worked with on an informal basis. But my own consultant really gave me no plan as to how to avoid it, how to whatever, just said, "Don't smoke, don't drink." The usual health problems. [Participant ] Well, after going from the GP to the hospital, there was nothing because all it could be was fast or slow progressing disease. Only because it's starting, they couldn't tell me when or what's happened. So, all in all, slow. I just had to come in for blood check ups so no real discussion about much at all actually. No do's, no don'ts and all those sorts of things. [Participant 0] Table.: Discussions about treatment Conversations about treatment (n=) by stage of disease Stage / n= Stage n=0 Stage / Participant describes discussions focused on medications (Anti-hypertensive drugs, steroids, antibiotics) as well as diet.0%.00% 0.%.% Participant describes the feeling of having little or no treatment options discussed.00%.00%.%.% Participant describes discussions focused on treatments of peritoneal and/or haemodialysis through to kidney transplant.00%.00%.%.% Participant describes discussions focused on delaying disease progression and treatments of peritoneal and/or haemodialysis % 0.00%.%.% Conversations about treatment (n=) comparison with comorbidities Participant describes discussions focused on medications (Antihypertensive drugs, steroids, antibiotics) as well as diet Anxiety 0.% Hyperkalaemia n=0 0.00% Hypertension n=.0% Sleep problems n=.%.% Participant describes the feeling of having little or no treatment options discussed.%.%.0%.%.% Participant describes discussions focused on treatments of peritoneal and/or haemodialysis through to kidney transplant.%.%.0%.%.% Participant describes discussions focused on delaying disease progression and treatments of peritoneal and/or haemodialysis %.%.%.%.% Conversations about treatment (n=) comparison with location Participant describes discussions focused on medications (Antihypertensive drugs, steroids, antibiotics) as well as diet Regional/Rural n=.% Metropolitan n= 0.%.% Participant describes the feeling of having little or no treatment options discussed.%..% Participant describes discussions focused on treatments of peritoneal and/or haemodialysis through to kidney transplant.0%..% Participant describes discussions focused on delaying disease progression and treatments of peritoneal and/or haemodialysis.%.%.%

5 Participant describes discussions focussed on delaying disease progression and treatments of peritoneal and/or haemodialysis Participant describes discussions focussed on treatments of peritoneal and/or haemodialysis through to kidney transplant Participant describes the feeling of having little or no treatment options discussed Participant describes discussions focussed on medications (Anti-hypertensive drugs, steroids, antibiotics) as well as diet Figure.: Discussions about treatment (% of all participants) Discussions about clinical trials Participants were asked whether they had had a discussion about clinical trials. There were no significant trends in relation to stage of disease or comorbidities. The majority of participants (n=;.%) noted that they had not discussed being on a clinical trial, while (.%) had discussed clinical trials. There were 0 participants that had participated in a clinical trial or clinical research study. These participants were asked whether they felt supported and their experience throughout the trial. There were no common themes identified in relation to clinical trial experience with participants describing situations varying from being well supported, to not knowing exactly what the study was about: You know, I don't know about support. It was more a question - well the first one, yeah. That was fine, you'd have to go and see the nurse, you'd do a test, they'd check you out. Stuff like that. So that was fairly positive. [Participant ] It was quite a positive experience. Basically they explained that they had medication that was used for gout and that they believed that it would assist in the process of making it easier for your kidneys to process waste et cetera and they took me through what the trial would involve and basically from there I went through the trial, it was a two year trial. [Participant ] Could I tell you which ones they were? I don't know if I could tell you. No. To be honest, the clinical trials that I have ever been involved in, I can't really even remember what that was for. I remember receiving a massive documentation of paperwork while I was on dialysis. I person came in and talked to me at the time about what it was all about and then I had to sign the document. That was probably all I ever heard about the trial. I don't believe that I think I was in a test, in a study. I don't believe I ever knew; I don't even remember what was that for. I know I signed lots paperwork about that. [Participant ] There were two sub-group variations in relation to conversations about clinical trials. Regional/Rural participants described clinical trials not being discussed more frequently than metropolitan participants (.% compared to.% for metropolitan participants). Likewise, they described clinical trials being discussed less frequently than metropolitan participants (.% compared to.% for metropolitan participants).

6 Table.: Discussions about clinical trials Conversations about clinical trials (n=) by stage of disease Stage / n= Stage n=0 Stage / Participant describes clinical trials not being discussed.%.00% 0.%.% Participant describes clinical trials being discussed 0.%.00%.0%.% Conversations about clinical trials (n=) comparison with comorbidities Participant describes clinical trials not being discussed Anxiety.% Hyperkalaemia n=0 0.% Hypertension n=.0% Sleep problems n=.%.% Participant describes clinical trials being discussed 0.% 0.%.%.%.% Conversations about clinical trials (n=) comparison with location Regional/Rural n= Metropolitan n= Participant describes clinical trials not being discussed.%.%.% Participant describes clinical trials being discussed.%.%.% % Participant describes clinical trials not being discussed Participant describes clinical trials being discussed % Figure.: Discussions about clinical trials (% of participants) As a follow-up question, participants were asked whether they would be interested in clinical trials in the future. Most participants (n=0;.) stated that they would be interested in a clinical trial, with eight (.%) that were not interested and 0 (.%) that were possibly interested. Those that were interested spoke enthusiastically about the opportunity, both from a personal benefit but also to help others: Absolutely, I've mentioned that several - not to you - but I've mentioned it several times that I would put my name and in, and put my hands up for any clinical trials especially, by the way,... what's it's called, the latest addition to artificial kidney transplants. I would in a heartbeat put my name up for that. In fact, I've even applied to certain newsletters, which discuss clinical trials and have the potential to offer some specific candidates the opportunity to trial them. I'm not saying I would be chosen, but I would love the opportunity to. [Participant ] Yeah, if it's going to benefit. I mean, not necessarily me, but I know what I go through on day-to-day basis, and it's not as bad as someone that's facing a death sentence, but it's not nice either, you know? And if it helps somebody, yeah, for sure. [Participant ] Yeah, I would be interested in that cause I know... Again, from doing reading there's a lot of stuff out there. A lot of things that they are trialling. You know, it's something that could help me. [Participant ]

7 In relation to participants that were not interested, their reasons were primarily either just not being interested or not wanting any additional appointments to go to. In relation to those that were possibly interested, these participants noted that it would largely depend on the trial and balancing benefits and risks. It probably would depend a bit on the nature of the trial, I'd imagine. [Participant ] It is something I'll have to look into, I'm just not sure... I mean I've heard of it but I've never looked into it or read about it, so I don't know what's involved. It would depend what's involved. [Participant ] Yes and no, because, obviously, I think the aggression of trying to find different treatments and cures is a good thing, but at the same time I wouldn't want to risk something going wrong. And risking my own health. [Participant ] Table.: Interest in clinical trials Interest in clinical trials (n=) by stage of disease Stage / n= Stage n=0 Stage / Participant describes being interested in clinical trials.% %.% 0.% Participant describes possibly being interested in clinical trials.% Participant describes not being interested in clinical trials 0.%.00% %.%.% 0.%.% Interest in clinical trials (n=) comparison with comorbidities Anxiety Participant describes being interested in clinical trials.% Hyperkalaemia n=0 0.00% Hypertension n= 0.% Sleep problems n=.% 0.% Participant describes possibly being interested in clinical trials.%.% 0.%.% 0.% Participant describes not being interested in clinical trials.%.%.%.%.% Interest in clinical trials (n=) comparison with location Regional/Rural n= Participant describes being interested in clinical trials 0.% Participant describes possibly being interested in clinical trials.% Participant describes not being interested in clinical trials.% Metropolitan n=.%.0%.% 0.% 0.%.% Participant describes not being interested in clinical trials Participant describes possibly being interested in clinical trials Participant describes being interested in clinical trials Figure.: Interest in clinical trials (% of all participants)

8 Decision-making Who is involved in decision-making Participants were asked who was involved in decisions made about treatment and care. Almost half (n=;.%) of the participants noted that decisionmaking was primarily between themselves, family (in some cases close friends) and their treating physician. The remaining themes were variations of this combination with participants describing decisionmaking between themselves and family and (0.00%) describing decision-making between themselves and their treating physician. Participants in the latter group spoke about not including family as they didn t feel it was necessary at this time or they did not want to worry them: Table.: Decision-making process who patients consult Just me and the doctor. Well, my family... I've only got one son and his wife and my little grandchildren. I don't really want to burden them with all that, so I just talk to the doctor. [Participant ] Just me and my doctor. I guess I haven't really involved my family because to me it didn't seem that serious. Yeah it just seemed like well it's not, I'm okay. I don't think we need to get the family involved in how I should be treated... what treatment I should follow at this stage. [Participant ] If my specialist suggests something, I do like to go back to my GP and talk to her because I have a few other like conditions that she's aware of, like he knows but I guess she's my go to, I guess. Family, not so much. I'm single so I just have grown up children who I'll tell them some of it but I don't want them to worry either so I don't burden them with a whole lot of stuff. [Participant ] Who makes decisions about treatment? (n=) by stage of disease Stage / n= Stage n=0 Stage / Participant describes decision-making primarily between themselves, family (close friends) and treating physician Participant describes decision-making primarily between themselves and family (close friends) Participant describes decision-making primarily between themselves and treating physician.%.00%.%.00%.00% 0.00%.%.%.%.%.% 0.00% Who makes decisions about treatment? (n=) comparison with comorbidities Anxiety Hyperkalaemia n=0 Hypertension n= Sleep problems n= Participant describes decision-making primarily between themselves, family (close friends) and treating physician Participant describes decision-making primarily between themselves and family (close friends) Participant describes decision-making primarily between themselves and treating physician.%.%.0% 0.% 0.%.%.% 0.%.0%.%.% 0.%.%.% 0.00% Who makes decisions about treatment? (n=) comparison with location Regional/Rural n= Metropolitan n= Participant describes decision-making primarily between themselves, family (close friends) and treating physician Participant describes decision-making primarily between themselves and family (close friends) Participant describes decision-making primarily between themselves and treating physician.%.%.%.%.% 0.%.%.% 0.00%

9 Participant describes decisionmaking primarily between themselves, family (close friends) and treating physician Participant describes decisionmaking primarily between themselves and family (close friends) Participant describes decisionmaking primarily between themselves and treating physician Figure.: Decision-making process who patients consult (% of all participants) There were a number of sub-group variations. Participants with stage disease described decisionmaking between themselves and their clinician more frequently than participants with stage / or stage / disease (0.00% compared with.% stage / and.% stage / disease). Participants with anxiety and hyperkalaemia described decision-making between themselves and family more frequently than the general cohort (.% for anxiety and.% for hyperkalaemia participants compared to.% within the general cohort). Regional/rural participants described decision-making between themselves, family and their clinician more frequently than metropolitan participants (.% compared to.% for metropolitan participants). What is considered when making decisions Participants were asked about the things that they take into consideration when making decisions about treatment. The majority of participants and most common theme identified was taking into account the impact on everyday living and ability to live a normal life (n=;.%). This related to overall quality of life, with some participants commenting on the impact on their ability to work and travel to treatment: Well I am still working, it's only part-time now, but that's one of the factors. Because as I said, DAUGHTER's still studying and she's at uni, so we need both incomes to keep her there and let her do her thing. [Participant 0] Well obviously how it's going to impact my life, and my ability to work in the future, and all that sort of stuff. I'm still young you know, and I've got 0 years ahead of me, and that's what I have to have a think about. [Participant ] So then, when the decision came to be made, "well, you're going to have to start dialysis for what you want to do", probably the main criteria I used to decide what impact it was going to have on my life, if you like, or day-to-day living, is probably the main criterion that I focused on at that time. [Participant ] The next most common themes were taking into account the success rate of the treatment (n=;.%) and balancing the side-effects with potential outcome (n=; 0.00%). The following are examples of balancing the side-effects with potential outcome: The harm it will do me is one of the things I take... how well it will work, what are the risk factors? That sort of different thing. Which will be easier on my body? Things like that. Also, how can I fit it into my life? [Participant ] I haven't had a lot of options about treatment available to me, but I do just look at the likelihood of it helping versus the likelihood of side effects. [Participant ] The impact that it's going to have on me. The longterm impact it's going to have on me in the short term and impact it's going to have on me in the long term. Not only with my kidneys but also with my overall well-being and yeah the impact it's going to have in regards to side effects and potential outcomes for the kidneys. [Participant ]

10 Table.: Considerations when making decisions What is taken into account when making decisions? (n=) by stage of disease Stage / n= Stage n=0 Stage / Participant describes taking into account the impact on everyday living and ability to live a normal life (Quality of Life, ability to work and travel).0%.00%.%.% Participant describes taking into account the likely success rate and outcome.% Participant describes taking into account side effects (general) balanced with outcome.% Participant describes taking into account the impact on family.% Participant describes taking into account the impact on personal finance 0.% Participant describes taking into account advice from treating clinician.0%.00% %.00%.00% 0.00% 0.%.%.0%.%.%.% 0.00%.%.%.% What is taken into account when making decisions? (n=) comparison with comorbidities Anxiety Hyperkalaemia n=0 Hypertension n= Sleep problems n= Participant describes taking into account the impact on everyday living and ability to live a normal life (Quality of Life, ability to work and travel).%.%.% 0.%.% Participant describes taking into account the likely success rate and outcome 0.% 0.00%.0%.%.% Participant describes taking into account side effects (general) balanced with outcome.0%.%.% 0.% 0.00% Participant describes taking into account the impact on family.%.%.0%.%.% Participant describes taking into account the impact on personal finance.%.% 0.%.%.% Participant describes taking into account advice from treating clinician %.%.%.%.% What is taken into account when making decisions? (n=) comparison with location Participant describes taking into account the impact on everyday living and ability to live a normal life (Quality of Life, ability to work and travel) Participant describes taking into account the likely success rate and outcome Participant describes taking into account side effects (general) balanced with outcome Regional/Rural n=.%.%.% Participant describes taking into account the impact on family.% Participant describes taking into account the impact on personal finance.% Participant describes taking into account advice from treating clinician.% Metropolitan n=.%.%.%.%.%.0%.%.% 0.00%.%.%.%

11 Participant describes taking into account advice from treating clinician Participant describes taking into account the impact on personal finance Participant describes taking into account the impact on family Participant describes taking into account side effects (general) balanaced with outcome Participant describes taking into account the likely success rate and outcome Participant describes taking into account the impact on everyday living and ability to live a normal life (Quality of LIfe, abilty to work and travel) Figure.: Considerations when making decisions (% of all participants) There were a number of sub-group variations. Participants with stage disease described taking into account the impact on everyday living less frequently than the general cohort (.00% compared to.% in the general cohort). Participants with stage / disease described balancing side effects with outcomes less frequently than the general cohort (.% compared to 0.00% in the general cohort) while participants with stage disease described this more frequently (0.00% compared to 0.00% in the general cohort). Participants with stage disease also described the impact on their family less frequently than the general cohort (.00% compared to.% in the general cohort). Rural/regional participants described taking into account side effects balanced with outcome less frequently than metropolitan participants (.% compared to.% for metropolitan participants). They also described taking into account the likely success rate less frequently than metropolitan participants (.% compared to.% for metropolitan participants). However, they described impact on personal finance more frequently than metropolitan participants (.% compared to.% for metropolitan participants). Changes in decision-making In the final question about decision-making, participants were asked whether they felt the way they made decisions had changed over time since they were diagnosed. There was a relatively close response to this question with (.%) participants responding that they had changed the way they make decisions and (.%) that the way they make decisions has stayed the same. There were a number of sub-group variations. Regional/rural participants described having the same approach to decision-making more frequently than metropolitan participants (.% compared to.% for metropolitan participants). Participants with stage / and stage / disease described being more assertive in their decision-making less frequently than participants with stage disease (0.% stage /,.% stage / disease compared to.00% for stage participants). Stage participants also described making decisions in the same way more frequently (.0% stage /,.% stage / disease compared to.00% for stage participants). Participants with anxiety described being more informed and assertive more frequently than the general cohort (.% compared to.% in the general cohort). They also described having the same approach to decision-making less frequently than the general cohort (.0% compared to.% in the general cohort).

12 For those who had changed the way they make decisions, 0 participants (.%) noted that this was in relation to having a more informed process, assertive and considered process: Yes. Definitely. Well, it makes me want to research their rational behind it. Of why they want to do that treatment, and whether or not it suits my situation. Like I told you, I thought that them rushing me to the steroids was a bit extreme. [ Participant ] I think before 0 when I kind of... this was when I was really sick and I was getting second and third opinions from other specialists, I didn't have enough information so I was just desperately trying to cling on to anything that had the possibility to make me feel better or to lead, you know, a normal life, if you will. Whereas now, after speaking to different people I've, I think I've taken... because I'm, what's the word? I feel a little bit more empowered in making decisions because I know a little bit more about my condition and I know, you know, I think as I'm getting older as well, knowing how my body reacts. When you're young you've got no idea, you just feel sick and going by your families who don't get it either. [Participant ] They're probably different. I look into it a bit more, and I make more of a decision myself, rather than just being told what to do. [Participant ] For those who had changed the way they make decisions, there were an additional participants (0.00%) that noted that this was in relation to having a more holistic view and thinking more about the impact on their family: Definitely changed. It's definitely changed. Yeah. In the way that my appreciation for life has doubled. But, I did it in the past, I guess to answer your question, yeah, yeah. It has changed. I look at my wife, I look at my kids, I look at my family. And I say to myself, yeah, you know. You start putting other things first, now, you know? Yeah. [Participant ] Oh, yes, of course it's changed. I mean when I was first diagnosed, I was in my 0s, and no matter what everyone said, I didn't believe that the disease would go away, which it never has. And I think from right on, I remember saying to someone, I know that this isn't going to kill me, but I do know that it's going to impact me lifelong. So, for example, when we built our house, we put in extra pipes into the family room, so that if I did need dialysis, I could set it up in a room.so I wouldn't be shut away in the laundry, or somewhere where there are plenty of pipes. And just little things like that. So we took it into the design of the house So, always in the back of my mind is the possibility that will actually end up on dialysis. I work quite hard not to, but it means that I'm more likely to spend more money on travel now, then put it away for an act of old age. I suspect that my old age will be spend doing a lot of fishing. [Participant ] Yes. I have more kids now, so probably think about them before I make any decisions. [Participant ]

13 Table.: Decision-making over time Has the way you make decisions changed over time? (n=) by stage of disease Stage / n= Stage n=0 Stage / Yes. Participant describes having a more informed, more assertive, more considered/philosophical approach 0.%.00%.% 0.% No. Participant describes having the same approach over time.0% Yes. Participant describes having a more holistic view: considers how it will enable their life and the life of their family in addition to the impact on kidney health.%.00% 0.00%.% %.% 0.00% Has the way you make decisions changed over time? (n=) comparison with comorbidities Anxiety Hyperkalaemia n=0 Hypertension n= Sleep problems n= Yes. Participant describes having a more informed, more assertive, more considered/philosophical approach.% 0.00%.%.% 0.% No. Participant describes having the same approach over time.0%.%.%.%.% Yes. Participant describes having a more holistic view: considers how it will enable their life and the life of their family in addition to the impact on kidney health.%.% 0.%.% 0.00% Has the way you make decisions changed over time? (n=) by location Regional/Rural n= Metropolitan n= Yes. Participant describes having a more informed, more assertive, more considered/philosophical approach.% No. Participant describes having the same approach over time.% Yes. Participant describes having a more holistic view: considers how it will enable their life and the life of their family in addition to the impact on kidney health.%.%.%.0% 0.%.% 0.00% Participant describes having a more informed, more assertive, more considered/philosophical approach Participant describes having the same approach over time Participant describes having a more holistic view: considers how it will enable their life and the life of their family in addition to the impact on kidney health Figure.: Decision-making over time (% of all participants)

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