Table 5

Endorsement of domains for a PROM for LTCs

Empowerment23 interviewsIn terms of getting patients to participate in their care and to understand what matters to them, then we need to be measuring that because if we're not we're not going to change the way we do things (Participant 3, NHS Policy and Commissioning)
If it's a question about how in control the patient feels then that's great. If it's a question that says something like, 'Do you feel you're able to self-manage? ’ I'm not sure how well I would be able to answer that as a patient (Participant 1, GP)
When you listen to people you know they talk about being in control, wanting to have the information to be in control of their life (…) that's very much related to health (Participant 6, GP and CCG)
We need to build a more nuanced framework that takes into account the personal goals and the empowerment of the individual as well (Participant 12, NHS Policy and Commissioning)
I'm thinking there should be some consistent ones [items] (…) because they
are about resilience, ability to cope, self-care, confidence, you know, regardless of what you've got (Participant 25, Social Care Commissioner)
Quality of life or impact of illness and/or treatment on life17 interviewsFor long-term conditions measuring around, or focusing around sustainability of where they are and, I guess a bit around their quality of life and experience as well as actual clinical outcomes would be the thing to do (Participant 19, Healthcare Provider)
I think we need to understand what the impact is of quality of life (…) through engagement with the system (Participant 14, Regulator)
I think you want to know how the condition affects their daily life, that's a pretty obvious one (…) I think to what extent it affects their daily life and how important it is to them (Participant 11, GP)
Patient-specific or personalised goals14 interviewsIt's the outcomes that are important to me [the patient] (Participant 20, Voluntary Organisation)
I think there needs to be something in there around…you know what is the outcome…am I getting outcomes in terms of my, you know, my goals. Am I getting outcomes in terms of how I want my care to be done? (Participant 3, NHS Policy and Commissioning)
It's how you get beyond those biomedical outcomes to decide what is the main thing that matters to the patient really (Participant 24, Public Health)
As long as it was in a framework, people would get to personalise within a framework (…) I'd pick the ones [outcomes] that are most relevant to them (Participant 25, Social Care)
Functioning (including social, physical and psychological)14 interviewsA focus on function and functioning is much more important, and actually maybe that helps more [with] multimorbidities (Participant 1, GP)
You could think about it from a sort of motor sensory affective and functional domains [perspective] (…) and then subdivide them potentially. I suppose it could be…I think certainly having an affective domain would be useful and having a functional one would be useful and I think that whether you drilled down to very specific things…I don't know I guess it would depend on the condition (Participant 29, GP)
I guess if you're trying to do generic long-term conditions, I'm kind of interested in
well-being, functional status and probably pain (Participant 4, GP and CCG)
Social isolation is one [outcome of interest] for us, as is how mobile people are, so [is] how self-sufficient they are (Participant 26, Social Care Commissioner)
Social participation13 interviewsI welcome something about social participation, that's really important (Participant 6, GP and CCG)
Many of the people I work with in mental health, what they want to focus on is having a roof over their head, having some money coming in and having some friends (…) we need to see what we're doing around that and that quality of life and that…all the stuff around social inclusion (…) and are we meeting what the patient wants (Participant 30, Psychiatrist)
Psychological well-being11 interviews[Currently] a lot of things that we capture tend to be just focusing on the physical health, and as a matter of routine what we want to try and change is that actually people's mental well-being is considered in terms of some of the core questions asked (Participant 7, NHS Policy and Commissioning)
Mental health well-being is something that could be common across them all [long-term conditions] (Participant 23, Nurse Practitioner)
Symptoms or clinical outcomes7 interviewsI think pain is a key issue and that, you know, the management of pain (Participant 20, Voluntary Organisation)
For long-term conditions measuring around, or focusing around sustainability of where they are and, I guess a bit around their quality of life and experience as well as actual clinical outcomes would be the thing to do (Participant 19, Healthcare Provider)
Access to services (includes access to information)5 interviewsI mean it's not really an outcome measure but in terms of people accessing services I thought that one thing that could be common across all [conditions] is any frustrations that people might feel, which then in turn affects their self-esteem or their self-empowerment, (…) if they can't get the service or the medication they need (Participant 23, Nurse Practitioner)
Joined up nature of services5 interviewsThe patient reported outcome is that their care feels joined up (…) but you'd have to word it differently to make it a PROM rather than a PREM [Patient-Reported Experience Measure] (Participant 10, Consultant)
Impact on carers4 interviewsPart of the one lens for a PROM is how well does my care support…how well are my carers supported with me in getting my best possible outcome (Participant 12, NHS Policy and Commissioning)
  • GP, general practitioner; LTC PROM, long-term conditions patient-reported outcome measures; NHS, National Health Service.