Table 4

Theme 3—content of an LTC PROM

Content of an LTC PROMEndorsement of DomainsSee table 5 for detailed account
Shared outcomes across LTCsYou have to look at people holistically and think about what's important to them about, you know, their activities, the daily living and how well or not they're able to perform those to whatever degree is acceptable to them (P2, NHS Commissioning)
We think that actually most people with long-term conditions have eighty percent of their support needs as being general, not condition specific (P7, NHS Policy and Commissioning)
The place of process/experience domainsSo what's your outcome for me would mean, are you getting the right treatment for whatever it is, or the right services for whatever it is; is it meeting the outcomes that you want as a person; are you having a positive experience of all of that and does it feel safe (P7, NHS Policy and Commissioning)
[A PROM would] be easier to normalise if it's combined with some experience measures at the same time (P19, Healthcare Provider)
I would fairly argue that experience is an outcome (…) and also patient experience is linked to other outcomes (…) So I would say they are all part of one sort of view on what good quality looks like. So I wouldn't want to separate experience out of outcomes (…) I wouldn't want it to be seen as a less important part of how you measure a good outcome (Participant 28, Voluntary Organisation)
Importance of stakeholder involvement in PROM designI would hope that any PROM development is done, you know, including clinicians, but also including the patients who are expert in their own ways about what their symptoms are and how they can be managed most effectively (P2, NHS Policy and Commissioning)
[We need] more direct involvement of people in [PROM] development (…) once it actually goes out into the real world we have to have complete confidence that it's relevant to the people and it reflects what they think (P16, Voluntary Organisation)
If you're going to design something you need to talk to the people who would be affected and really get their views on it (P21, Social Care)
  • GP, general practitioner; LTC PROM, long-term conditions patient-reported outcome measures; NHS, National Health Service.