Table 4.

Practical considerations and illustrative direct quotes

Practical considerations	Key findings
	Patient participants	HCP participants
Frequency (to allow for accurate recall)	Wide variation of responses from 1 week to 12 months. Agreement that it needed to match recall while allowing for treatment responses. Several patients would complete as frequently as asked—demonstrating no preference.	Wide variation of responses from, as required to 12 months. Focus on practicality, that is, how often they thought patients would complete and time burden rather than sensitivity to changes and recall. Before routine clinic visit was a popular response.
Timing (in relation to dialysis cycle)	Some patients wanted to complete during dialysis but noted this could be practically difficult, particularly if their access was in dominant arm. Most did not want to complete immediately after dialysis, the majority requiring some recovery time.	‘Horses for courses’ HCP11 meaning that people are different and will need different things. In terms of timing, some will need a short amount of time to complete, others will need longer. Options, in centre before or during session or patient’s choice at home (need time frame for completion? ie, within 5-day window). General agreement that straight after dialysis patients are very fatigued, so not optimum time for completion. Effects of cognitive status on concentration levels—ability to partially complete and come back later, recall bias will be relevant. Need to consider are you asking about today, last 2 weeks, last month, when designing a tool.
Setting of completion (home/in centre)	Some favoured completion in centre, others preferred to complete at home, particularly if carer assistance required.	Patients needed options (home/unit)—some patients need assistance so carers could help (unlikely nurses would have time). It was suggested better returns if encouraged to complete at unit: at home patients are ‘distracted by life’. ‘Will responses be different if completing at home—does that matter? ‘either way, you’re gonna get the reality of their life, so perhaps it doesn’t matter’.’ HCP05 Lack of privacy in centre noted by number of respondents.
Mode of capture	Varied responses—digital, paper or no preference. Proponents of digital capture displayed no obvious preference for choice of device. Only one patient had no access to a digital device at home. Preference for paper often reflected lack of confidence in ability to complete digitally, a number said they would need assistance to complete electronically. ‘I feel like my confidence is down and that needs to build back up again before I use the computer.’ Patient CD02	Advantages of electronic collection raised (real-time review, less admin, less likely to lose returns, easier to track responses, to review responses/feedback) but option of paper needs to be available, as some patients would be unable to complete digitally, and who would provide this assistance? Some pondered that current digital resources, that is, PatientView, are not widely used. IT systems require resource for infrastructure, upkeep and training.
Readability	No jargon or medical terms—got to be easy to read and understand. Guidance around more complex constructs. Availability of measure in other languages. ‘You may find you need to print them in their own Urdu or whatever, so that they do understand them. And that has to be very careful that the question doesn’t get lost in the translation.’ Patient MN07	Simple and clear rating scales for staff undertaking interpretation. Need to be culturally sensitive/valid and available in languages other than English.
Length of questionnaire	Generally, length was not an issue, provided patients could see a purpose to completion. There was a dislike of repetitive questions. Potential time burden of lengthy questionnaires, seen as an inconvenience for carers. ‘So the other question I was going to ask was were you put off by the length of some of those questionnaires?’ Interviewee: ‘No I wasn’t, no, you know I’d put aside the time to do it so no I wasn’t, I could see the point of them.’ Patient UV11	Consensus that the shorter the questionnaire, the better. Some commented that current validated PROs were much too lengthy.
Form of feedback	No overall preference: could be letter, email or discussion. Most happy to use graphical data. However, it is important that timely feedback given and PRO completion ‘not just a tick box exercise’. Some patients wanted carers involved in feedback process. ‘Because I don’t do emails and sometimes my eyesight, I can’t able to read. Yeah. I prefer in person.’ Patient GHO4 The need for timely feedback was made: Interviewer: So you’d want to see some sort of feedback within two weeks. Interviewee: ‘Two weeks and they sort it out. Not leave it for months and months and years and years, no good at all.’ Patient KL06 ‘As well as giving helpful information to help you manage your condition, it would also be useful to have information about what causes certain things in order to put your mind at rest, if you know what I mean?’ Patient CD02	Consensus that electronic feedback is ideal. Responses outlined in letter to patient or face to face in clinic to allow ‘probing’—but this requires resource. Agreement that longitudinal data would be advantageous to see trends—preference for graphical rather than tabular form—but scales need to be well thought through, 0–3 not considered ‘sensitive’ enough to be able to show changes—preference for EQ-5D thermometer scale… ‘but a ‘Blunt tool’—good clinician should pick up sensitive changes before PROs would.’ HCP11 No time to read lots of free text.
Setting of feedback	Currently most consultations take place while the patient is dialysing. Patients gave mixed responses to the wish to be seen in private, most did not want additional or extended visits at the dialysis unit and seemed resigned to being seen in open bays.	If medical staff were providing feedback in person, pragmatically best to do this in clinic, it was acknowledged this feedback can take place at the bedside during dialysis but participants noted this may affect the quality and content of the discussion.
Who provides feedback	No overall preference, but one patient felt more comfortable talking to nursing staff.	Variation on responses—some thought medical staff (but concerns raised around time and workload), others thought nurses (some anxiety regarding time constraints and knowledge/experience of junior nursing staff to know how to manage symptoms or issues raised by PROs). ‘Need clear process for review and feedback—’can’t have 6 nurses going back to patient to discuss responses’.’ HCP16

EQ-5D, EuroQol-5 Dimension; HCP, healthcare professional; IT, information technology; PRO, patient-related outcome.