Table 3.

Key findings—summary of direct quotes

Key finding	Illustrative quotation
1. Intervention characteristics	Patient participants	HCP participants
The importance of demonstrating efficacy/benefit The intervention must be flexible/offer choices Practical considerations	‘If they haven’t got a point for collecting them that isn’t going to be actioned or put into a specific piece of research, then they shouldn’t be there…‘Yes, it makes you unwilling to invest your own time in something that you hadn’t seen any benefit from in the past…. If it’s just a box ticking exercise for your unit or whatever, to say that I’ve complied with some directive and nothing is going to change, then why would you’.’ Patient JI18 ‘Yeah, but certainly filling it in is not an issue, I think discussing it and whether somebody has their partner with them or carer or whatever, I think it’s something you should offer them and it’s for them to make up their mind.’ Patient MN07 See table 4 for key findings and illustrative direct quotes.	‘one is convincing those patients and doctors and nurses that it’s [PROs] actually of use to man or beast. I think that is going to be the main barrier.’ HCP11 ‘I think if you could then see that it changed a consultation that meant that you went, ‘Oh, I didn’t know you were having that issue; I can do something about that’. The difficulty is if they then, it drives a lot of conversations that, you know, saying, ‘Yeah, can’t really do anything about then’, and then everybody may well think well this hasn’t changed anything so, you know, is it making you feel better writing it down? Don’t know really. So if there’s not an outcome difference to it then it just becomes a kind of form-filling exercise but there’s not obviously a benefit.’ HCP16 ‘I guess we have to give the option to the patient whether and how they want to fill this in or not because some patients may not want to fill it in. And I can think of a few patients on my dialysis unit that probably would not want to fill this in.’ HCP14
2. Outer setting
Identifying and measuring outcomes that matter How PROs fit into the ‘Bigger Picture’	‘I need to go out. I need to keep this going. I need to keep feeling that I’m worth something by bringing home a wage and working.’ Patient YZ13 ‘It does really knock the quality of life, some people tend to be more worried about the quantity of life but I’m interested in the quality of life because not having quality of life, I can understand why some people do commit suicide, there’s no quality.’ Patient ST10 Continuity of care and communication with primary care: ‘ Yeah, the other thing I find with my GP for example, now she rang me, I have monthly blood test here and every 12 months you go to the GP and I go to the diabetic clinic, my diabetes is good… so the doctor (GP) rang up and said, I think you’re anaemic, I said well I’ve had these blood tests at the dialysis centre and nobody phoned up that I was anaemic….’ Patient ST10	‘Yes, definitely. We see that all the time don’t we? I mean you know, we see that all the time. I mean that’s the battle, to get people to dialyse three times a week rather than twice a week [yeah, yeah]. So you know, I’m having this battle with a man in XUnit at the moment who’s decided to go and dialyse twice a week and he tried it for a few weeks. And he said, ‘Oh, I feel perfectly well. So I’m just going to carry on dialysing twice a week’ and I said, ‘Well, that’s not the point’ [laughs] [absolutely]. And he said, ‘Yeah, but I feel fine. I get more time, I get more spare time’.’ HCP13 ‘I think so, I think it [useful for GP’s to be able to see the patients results, answers to some of these questions] would because most of this is in the community so it would be very, very useful for the GP’s to be able to access all the information.’ HCP04
3. Inner setting
Compatibility of PROs and approaches to delivery of care in HD settings	Task-centred care versus patient-centred care: ‘yes, you might be surrounded by them [unit staff] but they might not be asking questions, you might not feel you can ask questions. There might be aspects that you might not necessarily think it is worthwhile asking.’ Patient JI18	Task-centred care versus patient-centred care: ‘we don’t always see the bigger picture, we’re so focused on getting that needle in to get dialysis, that we forget, oh my god, there’s a person on the end of that arm….’ HCP12 ‘in-centre, it’s looking at the patient, home haemo it’s looking at the person.’ HCP08 ‘I think the nurses have got time to get to know the patients to a certain extent as far as medically, their medication is involved. You know, how poorly they are, obviously what they need. Unfortunately, I don’t think they have time to carry that a bit further….’ HCP02
PROs as part of a wider educational framework—‘the information loop’	Health literacy of patients: ‘Talking about monthly QA reports—’…and we all get these, telling us about our potassium, and somebody says to me, do you understand them? I say, I haven’t got a clue, he says nor me, I says, all I know, when I go in there, they tell me that’s okay, that’s okay, that’s okay, I said but I haven’t got a clue’.’ Patient BA14	Implementation must be part of a wider framework of training, education and support: ‘this will be exciting if implemented correctly, but there’s a whole massive amount of work, it’s not just this, it’s everything else around it yeah, I think so.’ HCP17 Staff education requirements: ‘So I guess education would be vital, but they’re about communication skills, they’re about learning what matters in chronic disease management. And it would also be about, because that’s burdensome, it’s hugely draining to do it day in day out with a similar group of people. And you would need to put in support, raising the education for them is one, raising awareness. But I also think if you are hearing people’s symptoms, which are as I say some of them you can’t resolve and you’re hearing them day in day out, you need somewhere to offload to as well. So it’s like, but building a good structure around what’s needed. But that doesn’t mean don’t talk about them.’ HCP05
4. Characteristics of individuals
Previous experience of using PROs Concept of PROs versus PREMs Multidimensionality of ESKD and consequent challenges	Have you ever completed anything like these questionnaires before? ‘No I don’t think so.’ Patient UV11, Patient BA14 ‘No I haven’t.’ Patient WX12 ‘I think I have, but I can’t remember, it must have been some time ago…I don’t think there were as many questions as that one.’ (KDQOL-SF) Patient DC15 Interviewer: Have you been asked to complete anything like that [exemplar PROs] before? Patient MN20: I’ve done questionnaires before, I think. Interviewer: Have you? What kind of questions did they ask? Were they similar ones? Patient MN20: Most of them have been in here about the staff and stuff about dialysis and how long I’ve been on it. It was similar. ‘…obviously the doctors can’t cure that, they can’t cure that, they can only cure your medical condition, they can’t cure your mental condition so that’s for you, but they can make it as well, so they give you the positivity to carry on.’ Patient BA14 ‘…it’s most of the time that I get anxious with social situations because of my other medical problems. It’s not just about my kidney problems and then dealing with the social aspect. It’s my kidney problems, plus my other medical problems and then the social situation. I have to deal with my other medical problems before I can even contemplate going out with family or friends…or shopping and things like that.’ Patient WX12 ‘The main problem? [with dialysis] Social life. Absolutely. It’s not just my social life; it’s the wife’s social life as well. She’s like a nurse to me really. Without wife, I don’t know where I’d be. I’ve got two lads but you can’t rely on them to be here.’ Patient YZ13	‘I mean I’ve used them in various research projects…And that’s one of the reasons why I haven’t routinely used them in clinical practice because I think they’re fine for research, but I haven’t found one that’s hugely clinically, that I feel I’d really want to use.’ HCP06 ‘[PROMs & PREMs] I get confused and I think there’s crossover and I find it quite difficult to draw a line between experience and outcome. Because for example, the experience of a patient. So, tiredness for example can be strongly affected by a patient experience. So, you have travelled six hours to get there or waited for your transport, your experience, it affects your tiredness which is—I think—I’m not sure always it’s a useful distinction.’ HCP12 Interviewer: Yeah. So do you think we should be measuring them (PROMs and PREMs) at the same time? HCP16: I think that they should be part of the same thing. I think that they should be seen so that we can pick apart whether people are happy with the service that they’re getting but also how that interplays with their health and their feelings and their symptoms so I think the two things overlap. ‘If we can’t do much about it, then it’s not our problem, sort of thing. That’s one of those barriers; I think there’s the worry that it uncovers things that are uncomfortable to talk about….’ HCP15 ‘Acknowledgement that there are aspects of care that do not fall within doctors ‘remit’ ‘things that aren’t necessarily medical, that may relate to social services or other things that are driving a symptom or feeling that relates more to social care, to a dietitian or other members of the team….’.’ HCP16
5. Process of implementation
Supporting the process of implementation Barriers to effective implementation: time/attitude/IT problems Facilitators to effective implementation: how PROs might deliver a relative advantage over current systems of care delivery	Importance of leadership and champions: ‘Yeah, Yeah, I’ve helped a lot of people. When I used to go to look at their machines, because they send me first to look at the room and whether it can be done, they didn’t even know I was on dialysis. They’d look at me and say ‘you seem to know a lot about this’. I said, ‘yeah, because I’m a dialysis patient’.’ Patient YZ13 ‘They [Doctors] haven’t got time anymore. We all know that, but it’s nice to not be rushed along and ignored.’ Patient MN20 ‘It does annoy me when we have problems with logging in and passwords.’ Patient WX12 Acts as a communication tool: ‘Yeah, yeah, you know, if you had a form to fill in, you're divorced from it because obviously within our human nature we always, we don’t want to look vulnerable, we don’t want to look vulnerable, right, so therefore, if the doctors say, you might be feeling sick, and you think, well I only get it now and again, to yourself, this is, so you don’t mention it but if you mentioned it, he or she can make a diagnosis on that,….’ Patient BA14 ‘I couldn’t seem to settle in, i.e. couldn’t communicate with the nurses, me as a person, I don’t communicate very well.’ Patient QR09 Help target the consultation: save time. ‘Probably save your doctor from doing some of the work as well…As I say, if I’m not giving information that I need, we’re not getting anywhere, are we?’ Patient AB01 Help deliver person-centred care. ‘If we’ve got monthly bloods and we’ve got the information on that at the same time, they can look at that [ePRO] instead of looking at the computer and seeing what’s really going on with that person….’ Patient AB01 ‘Even if that doctor is reading that one-on-one, he can look at this…even if it’s on a computer, he can look at it and say, ‘He’s got a problem with that area. Let’s go and deal with that’.’ Patient AB01 ‘These questionnaires are good as well because a couple of symptoms cropped up that I do get but that I forgot is related to everything. I thought, ‘Oh, that’s why I get that then. Oh, that’s why I get that’.’ Patient WX12	Importance of leadership and champions: ‘Time, resources, you know, if someone’s not here, say, if it was me implementing it, if I’m not here, I’m thinking, will it get done? It’s as simple as that.’ HCP17 ‘You might need to bring somebody else in from outside, yeah but that runs its own complications so what’s the answer, a patient representative might be an answer, somebody who knows dialysis.’ HCP17 Bottom-up approach: ‘Often there are new things that are introduced and when you’ve just got to do it attitude. Now that just gets peoples backs up to start with…have a proper process in place to prepare people.’ HCP07 ‘So it has to be easy access for the patient. It’s pointless having something they can’t actually get to and that’s scary or frustrating to get onto, to log on or something, yeah.’ HCP05 Could reduce workload: ‘I find it really interesting how people would say that this is an increase in workload, when actually this is things that you need to be looking at anyway. For me this is nothing out of what I’m already looking at in every patient and of course it will be an increase in workload if you don’t look at them.’ HCP17 Potentially time saving: ‘I think the PROMs, certainly one is useful when they fill them in but quite often they haven’t filled them in and it’s then sometimes difficult to ascertain have they not filled them in because they have got symptoms but they just aren’t necessarily engaging or thinking oh therefore I will fill this in or whether they haven’t filled it in ‘cause they’re fine. But then at the same time it’s quite easy to ask a patient and say, ‘Have you not filled this in?’, because actually they’re fine and then they’ll say, ‘Yes, I’m fine. There’s nothing to worry about’, sort of thing and then in a way you can think well I can, I don’t necessarily need to give you targeted questions ‘cause you’ve already got the opportunity to do that. Sometimes it then speeds things up.’ HCP06

ESKD, end-stage kidney disease; GP, general practitioner; HCP, healthcare professional; HD, haemodialysis; IT, information technology; KDQOL-SF, Kidney Disease Quality of Life Short Form; PREM, patient-reported experience measure; PRO, patient-reported outcome; PROM, patient-reported outcome measure.