Table 2.

Selected participant quotations for each theme

Theme	Selected Quotationsa
Explicitly prioritized by patients
Articulated preferences and goals	“Outcomes that are important to the patient, therefore you have patient input as to what those outcomes are, not us figuring out what they are for the patient. That’s patriarchal. We know what’s best for you, let us tell you. It should be driven from the patients.” (Canada)
	“I would define it as a holistic outcome, as defined by, or as chosen by the individual. So that might be holistic in the sense of spiritual or physical or family related.” (United Kingdom)
	“It comes down to being less paternalistic and trying to allow patients to express what they would like out of life, and trying to achieve those goals.” (Australia)
Ascertaining treatment burden	“What part of burden of kidney disease is so onerous, what in their dialysis treatment is so bad to their physical functioning and mental functioning, and then, we can come back and develop a list priorities on how to improve what they think is causing their most burden. That would be the most patient–centered way to approach it.” (United States)
	“A measure of burden of illness or intrusiveness of disease would also be a very important one in hemodialysis; it’s an intensive, time–consuming, life–altering intervention. Strategies to minimize that would also be very important to capture within a measure, measures of quality of life in hemodialysis.” (Canada)
Defining hemodialysis success	“Going systematically to the patients and saying we’re going to try and make dialysis better, what is it that worries you about it?” (United Kingdom)
	“I would imagine are outcomes that are important to the patient, so if you ask a patient ‘if we’re going to improve your health care or give you some new therapy, what would make a difference that would help you?’” (Australia)
	“Something that might change their journey, their experience of being on dialysis.” (Australia)
Distinguishing a physician-patient dichotomy	“We think of something more medical as far as outcomes day to day, but you forget that patients have difficulty sleeping and will complain to you.” (United States)
	“If you take a group of doctors and asked them how you’ve measured the quality of dialysis, they’d tell you about survival, BP control, hemoglobin levels, whereas patients will talk about completely different things, like do they manage to do what they want to do. Many patients will tell you that it’s quality of life rather than survival.” (United Kingdom)
	“It’s we as doctors who feel numbers, because we’ve got nothing else to feel.” (Singapore)
Supporting shared decision making	“I give them the pros of doing what I think are this, this, and this, we recognize the downside of this for you is that, try and give them a little bit of a decision in how they want to approach it then. I feel like I’m there to guide them a bit through that choice, but I’m not going to make them do it. They’re living with the disease and the therapies.” (Canada)
	“Through negotiation, you give in a little. When it comes to people on dialysis who will remain on dialysis for the remainder of their time, I generally give in, because I believe that the only thing you can do is provide some information and let them choose. If a high phosphorous is against current guidelines, but it means that at least the patient enjoys his life, can eat what he wants, then why do I care about the phosphorous? That is also because probably my conviction of how much that influence of survival is much weaker than some of my fellow physicians who have been trained completely differently.” (Belgium)
	“It’s usually a compromise; you say to them, I think so many hours of dialysis is just not enough for you, and in the long term, it’s going to have a bad effect on your survival. And then you’ve got to balance that against what they say to you; they say, ‘yes, but I feel so crummy with dialysis, I can’t do that long.’ So instead of going for four and a half hours, they’re going for four, and we end up compromising on four and a quarter.” (Australia)
Optimizing wellbeing
Respecting patient choice	“If someone’s phosphorus is 5.1, I don’t berate them to death, because it should be 4.5, because there’s no evidence that getting them to 4.5 does anything, so I live with it. Why am I going to torture someone an additional 30 minutes on dialysis if it doesn’t really mean anything, it’s just helping me out to meet my targets, so I don’t get into trouble with CMS.” (United States)
	“I was always taught to treat the patient and not the numbers or not the target.” (Canada)
	“As a young doctor, one is tied to surrogate parameters. Now I focus more on what would the patient like. That’s more and more important for me to see the whole picture, not only the disease, but be in charge for the whole patient as a human being. I have to stand back and accept the patient’s will and not be too strict or egoistic of my goals.” (Austria)
Focusing on symptomology	“Symptoms are anything that affects your life. Symptoms mean and might also mean, how often am I admitted to hospital? I’m not thinking of a specific symptom like pain, or tiredness, or fatigue, although those things are important if they’re intrusive, and I don’t think that any one symptom matters any more than others; it’s just generally how functionally people feel, whether they have distracting symptoms that stop them from feeling comfortable, and whether they have an unpredictable, hectic lifestyle, because they’re constantly getting so sick they have to come in to hospital.” (United Kingdom)
	“Given our limited ability to reduce the mortality of dialysis, it’s more powerful to use symptoms that are meaningful on a daily basis, because some of those have a close relationship to morbidity and mortality but aren’t necessarily the drivers for that.” (United Kingdom)
Perceptible and tangible	“I recognize the things that are important to us, because they are on the dashboard that we can see, and they’re surrogates for how well we’re treating the patients. The patient might say, I feel fine, I don’t care I’ve got a phosphate of two and I’ve had a weight gain of four, and my predialysis BP was 170 on 110, I don’t feel any of that. But I do want to get rid of my itch, and I don’t like this feeling of feeling yuck when I go home after dialysis. So we use all these as kind of surrogates.” (United Kingdom)
	“Patients don’t feel numbers.” (Singapore)
Judging relevance and consequence	“Mortality would be number 1, and we’d focus on things we can see—parathyroid, potassium, acidosis. Things that matter, even to the patient, but they don’t know that.” (United States)
	“Patients probably underestimate the consequences of an infection. We know that’s what kills our patients.” (United Kingdom)
	“These patient-centered outcomes don’t necessarily represent the outcomes that truly matter to patients, because what I subconsciously consider a patient-important outcome is fracture risk. I’m not necessarily certain that it is the outcome that patients value most, because they will probably think the polyneuropathy and the time spent on dialysis is more important than a theoretical fracture risk, yet I consider that a patient-centered outcome.” (Belgium)
Comprehending extensive heterogeneity
Distilling diverse priorities	“The perceptions of an older patient who has outlived some of their friends and relatives, has seen their family grow up, maybe quality of life for a shorter period is right for them. People earlier in their lives with responsibilities for children and income and family may be prepared to put up with a lower quality of life to see their family grow up or be able to maintain some sort of income. So I’m not sure that there is a one outcome that fits all.” (United Kingdom)
	“Rather than specific symptoms, there’s no one symptom that I’d say all trials should report this symptom, because we don’t have a symptom-led kind of specialty. There are a lot of different symptoms; it’s very heterogeneous. Perhaps some kind of general symptom freedom or general quality score.” (United Kingdom)
Highly individualized	“Not all the patients are the same, they’re not cookie cutter, it’s tough to just draw guidelines and say that this is what everybody should do. Patient-centered outcomes would make me think of more individualized patient care.” (United States)
	“Patient-centered outcomes [are] at an individual level that brings a lot of layers of heterogeneity into it. So you can’t apply statistical models to it very easily.” (United Kingdom)
	“This is very individual. Some of them have big problems, some of them don’t. They feel the same after dialysis as they felt before, and some of them, for the rest of the day, they are knocked out. I don’t know why it’s like that, there is such an individual difference.” (Germany)
Attempting to specify outcomes	“Things like not phosphorus, not albumin, but more like mortality, hospitalizations, quality of list—honestly, I’m guessing.” (United States)
	“[Patient-centered outcome] has been, just fledgling. So it’s starting to emerge, but I don’t think it has really hit the dialysis world at all.” (Canada)
	“I’m going to edge off into areas that I’m less comfortable with here. I would say, from my group of patients, their desire is to remain well rehabilitated and independent. So if we had a measure of independence, autonomy, a sense of personal control, these are all things that I hear patients saying they’d like to see and they regret losing.” (United Kingdom)
	“The problem with quality of life is that we don’t know what it actually means.” (Australia)
Broadening context	“Maybe we don’t deal with them, because we see them as less medical, the areas that we would intervene for a patient, where if you have an isolated symptom, you think maybe I can try something to treat your cramps, or maybe I can try something to treat your restless leg. But ability to travel, how am I going to impact that? There are all of these real world barriers to traveling. Or impact on family, that’s kind of beyond my control, so maybe it’s just a sphere of influence thing that influences that.” (Canada)
	“You need to look at the whole pathway of care essentially—everything around it, broader things—transport, how often they have to come, where the dialysis unit is, who brings them, what financial impact there is, how long they have to come for, did they have a choice of when, how, where patients dialyze.” (United Kingdom)
	“That’s really complex and there’s so many things that influence happiness, with most of which are beyond our control.” (United States)
	“And improving the overall health in a dialysis patient, that overall health is defined by defined by whatever the WHO definition of health is.” (Austria)
Clinically hamstrung
Professional deficiency	“If we can’t move the needle on mortality, if you’re middle aged and you’re diabetic, you have 5 years to live on dialysis, your mortality’s roughly 20% a year, how can I make those 5 years as productive as meaningful as possible for that patient? If we can’t get quantity of life, we should focus on quality of life.” (United States)
	“Every nephrologist you’ll ever talk to will agree that we should work harder to make our patients feel better, but I think we’re hamstrung by the fact that (a) we don’t know how to make our patients feel better, (b) we don’t even know how to measure what is better or not better.” (United States)
	“I often feel deficient in addressing them, because we don’t have good evidence around different strategies that I know will be effective for them.” (Canada)
	“We’re correcting electrolytes, but if people say we don’t feel any difference, this is bothering me, and I don't know the solution.” (Belgium)
	“You are a bit emasculated by the things you can’t do anything about, you just feel a bit impotent. What use am I really? And all you can really do is turn up the dials and so—turn up the hours or fiddle with a few medicines, and none of which tends to make huge amounts of difference. Having said that, that’s therapeutic nihilism, isn’t it?” (Australia)
Uncertainty and complexity in measurement	“It’s a lot harder to measure things like impact on family or ability to travel. There’s been a dearth of research on these outcomes. We need to find better tools to quantify the priorities that our patients think are important to them so that then you can use some science and either develop an intervention.” (United States)
	“It’s a crime of opportunity. You go into a jurisdiction, there’s a demand for accountability, and then people say, well what can we measure, and usually you lean on the data sets you have available to you, and there are certain things that are easier to measure than others, and those tend to be the things that we go after.” (Canada)
	“How would you commission for these outcomes? And that means you have to measure them relatively easily. We’re really talking about things that are responsive as well.” (United Kingdom)
	“The problem is the quality of life is really hard to measure in a dialysis setting, because the dialysis process itself impacts so much on quality of life.” (Australia)
Beyond medical purview	“I rarely ask my patients, because I don’t know what I’d do if they said, ‘I’m not sleeping well.’ And impact on the family. It’s not quite clear what control we have over that.” (United Kingdom)
	“We need to reaffirm those decisions, if not on an early basis, then on a regular basis, in our dialysis patients, what do you value, what’s important to you, are we meeting your needs. We need to say these are the options available to you in our expert view. We don’t do that remotely well enough, and part of that is because it’s an extraordinary time commitment.” (United Kingdom)
	“We need to be looking at whether a patient sleeps well at night. We need to be looking at restless legs. We need to be looking at pruritus. We need to be looking at the ability to take your grandson or granddaughter out for a walk or some equivalent. We need to be looking at a happiness index as a result within the hemodialysis population, as a result of a new therapy that has come out. That’s really complex, and there’s so many things that influence happiness, with most of which are beyond our control.” (United States)
Specificity of care	“We’re very segmented in our view of our patients. CMS and KDIGO said look at these things, like Kt/V, anemia, phosphorus, those are the only things we care about.” (United States)
	“I get the sense from patients that they feel like, we come in, we don’t pay a whole lot of attention to what their priorities are, and we zip on by and check our boxes but aren’t really invested in listening to them, and it’s a challenge, because the way care is structured is such that when I do dialysis rounds, I have to see 100 people in a half day. You can only spend so much time and get through and see everybody.” (Canada)
	“I go to my satellite unit once a week and see 30 patients; it’s quite hard to take a holistic view. One focuses very much on very specific things, like their access for dialysis, whether they’re on a line or a fistula, what’s their fluid status, what are the parameters, are they suitable for a transplant; it’s a very regimented set of review parameters.” (United Kingdom)
Mechanistic mindset	“Nephrologists count bodies, count death, complications, admission rates. So we go for these. We have these hard outcomes, BP, phosphate levels, bicarbonate levels. Nephrologists are an obsessive-compulsive bunch, we’re very early potty trained, and we want everything to be clean.” (United Kingdom)
	“The patient who’s really badly washed out at the end of dialysis is the patient who simply goes home to try and sleep afterward. That impinges on their intradialytic time and is an indicator to me of fatigue. It’s interesting how the technical thing that I as a doctor would link into some of the more subjective things that patients put as lower importance.” (United Kingdom)
Avoiding alarm	“You don’t necessarily want to say to a new patient there’s a 20% chance of you ding in the first 12 months, and there’s a 10%–15% chance of you dying in every 12 months after that. So your mortality rate at 5 years is well over half. Patients don’t entirely realize it to begin with. Once they’ve been on dialysis for a few years and they see the guy in the next bed has disappeared, they realize that dialysis carried a very, very high death rate. We don’t want to upset them and frighten them.” (United Kingdom)
	“If patients knew what their cardiovascular risk was, they’d be completely shocked, and there’s a question about how much we disclose to patients about what’s likely to happen to them. You could frighten the living daylights out of them if you tell them black and white truths.” (United Kingdom)
	“Not a lot of dialysis patients are aware their death risk being as high as some serious sort of cancers. It’s interesting how they can ignore it, because they see people around them dying all the time. I don’t think they really see that clock ticking once they start on the dialysis. We say, ‘they’re going to have a mortality risk of 10%, 15% a year?’ It’s confronting.” (Austria)
Paradoxical dilemma	“I’m all for patient-centered outcomes, but they don’t know that short dialysis, infrequent dialysis, free diets, might well impact on something else.” (United Kingdom)
	“It’s always really hard for them to [do] an extra half an hour if they are already on 4 hours or if you want to prolong from 3.4 to 4 hours. But on the other hand, I saw tremendous results on everyday long–time dialysis, had amazing results with dialysis every day, 8 hours. The patient was off their hypotensive drugs.” (Austria)
Undermined by system pressures
Adhering to overarching policies	“We’re always pushing for fistulas on our patients, and there’s certainly a subset of patients who would benefit from a graft, and this has been published, in older patients certainly, the lack of maturation of a fistula is something that’s been cited or using grafts or even catheters in those patient populations.” (United States)
	“There’s a problem with the structure, the way we’re incentivized to treat patients, like McDonald’s; everyone’s treated the same way, where it should be more customized.” (United States)
	“The guidelines say you should; we still often don’t, because we feel that patient is not going to have a functional fistula, because he’s old and he will have bad blood vessels.” (Belgium)
Misalignment with mandates	“A lot of patients, in my own opinion, don’t need three times a week dialysis. It’s a very rigid requirement; it’s a one size fits all prescription, but it shouldn’t be that way.” (United States)
	“The main pressure for physicians is CMS dictating certain outcomes, and the top ten outcomes for patients are not even involved in what CMS are dictating. We’re not trying very hard to improve patient-centered outcomes, because the financial incentives that are essentially driving us to develop improved outcomes dictated by CMS, so everyone has to have a Kt/V over 1.2, everybody has to have fistula, to have phosphorus level 5, a hemoglobin between 9 and 11, nobody really cares what the KDQOL of the patient is.” (United States)
	“If we really cared about what patients want, we would persuade the government and other people who fund these things to build in extra capacity, so people can actually not just survive but actually enjoy what they’re doing. That’s where we’ve let patients down, because there’s no trial, nobody cares, because that’s not going to extend their life, but the quality of life, if we were able to measure it for having those holidays and looking forward to them, might be measureable. Well of course it would cost money, and therefore, in fact, if you have neutral quality of life, no extension of survival and additional resource, NHS will throw it out, because that’s the world you live in with NHS.” (United Kingdom)
Resource constraints	“If you’re looking at optimizing the service so that it’s more patient centered, it might sometimes conflict with what the management of a service think needs to happen, but that tends to be a financial thing.” (United Kingdom)
	“In the United States, there’s an enormous pressure on keeping the hours short to fit everyone in to the things in the way [they are] funded. Even here we’re not funded per hour of dialysis we’re doing, we’re funded per episode dialysis.” (Australia)
	“When I was [at my previous hospital], I had vascular surgeons and trained professionals. Whereas where I work now, general surgeons do the fistulas, and the quality is very different.” (United States)

CMS, Centers for Medicare and Medical Services; WHO, World Health Organization; KDIGO, Kidney Disease Improving Global Outcomes; KDQOL, Kidney Disease Quality of Life; NHS, National Health Service.

^aQuotations tagged by country only to maintain anonymity.