Laura Coates, MBChB, MRCP, PhD: What Factors Influence Patients' Opinion of Remission?

Rheumatology Network interviewed Laura Coates, MBChB, MRCP, PhD, lead investigator of the study, What influences patients’ opinion of remission and low disease activity in psoriatic arthritis? Principal component analysis of an international study of 424 patients. Coates is an Associate Professor at the University of Oxford. We discuss what the study adds to existing psoriatic arthritis (PsA) research, what some of the key factors are that impact a patient’s opinion of remission, and the clinical significance of this study.

We previously wrote about the complexity of patients’ opinion of remission here.

Rheumatology Network: Hi, Dr Coates. Thank you for joining me today. To begin, what was your initial interest in investigating this topic?

Laura Coates, MBChB, MRCP, PhD: So I have a real interest in treat-to-target and the idea of trying to control disease effectively so that we can improve outcomes for patients. And we use a lot of different targets. And as part of the ReFlaP study, which was the data set that we used for this analysis, the main aim of that study was to look at how patient perception of remission and low disease activity correlated with our targets, which usually include patient-reported measures, but they often include quite a lot of physician assess measures. So, joint counts, skin scores, that kind of thing. So, the original study wanted to look at how well they match up. And they match up to a point perhaps. As you'd expect, there are some patients who meet the target, but still have symptoms for other reasons, and so feel that their disease is not as well controlled as it could be. And there are some patients who feel fine, but actually, we're worried that they have too much disease activity. So, there is a bit of a mismatch. We wanted to look in more detail at what remission and what low disease activity really meant to patients, and what aspects of their disease and their symptoms really feed into that opinion of being well controlled.

RN: What does this study add to existing PsA research?

LC: I think we haven't really looked at this from the patient perspective in any great detail. There are some qualitative studies, interviews with patients talking about what remission or what flare means to them. And but we've never really looked quantitatively at the patient perspective. This data set had a lot of detail, a lot of different outcome measures, questionnaires, and disease assessments, so that we could look at really what predicted a patient feeling well and how much that linked to disease activity, like swollen joints, and how much that links to disease impact. So, pain, functional ability, participation.

RN: What are some of the factors that impact a patient's opinion of remission?

LC: I think essentially what our analysis showed is that everything impacts on it, perhaps as you'd expect, so there's a real variation. And there's a lot of different aspects that come together to create that feeling of being in remission or not. But the biggest driving factor is disease impact. It's not just the disease activity, which rheumatologists often focus on and which a lot of our treatment goals are orientated towards, but it's things like symptoms, functional ability, being able to work, being able to do the social activities that you want to, playing with your family, meeting friends, that kind of thing. It's a much more holistic idea of remission, rather than it being just linked to disease activity.

RN: What were the key findings of your study?

LC: I think the key finding is that for remission in patients, what matters is low disease impact is being able to get back to normal life. And that's different to what a lot of our remission measures are focusing on. They're focusing on disease activity. It's this idea that, as rheumatologists, we really focus on treating disease activity, increasing treatment, suppressing the immune system more to try and get rid of that inflammation. But actually, beyond that, obviously, that's important. We want to control disease activity. But beyond that, we probably need to do much more. To get people back to being well, we need to rehabilitate them. If they've suffered muscle weakness, we need to help with their functional ability. We need input from physiotherapists and occupational therapists, people who can support with pain and lifestyle changes to try and get people as good as they can be in their day-to-day life.

RN: Are you and your team surprised by the results?

LC: I think I think probably not, if you think it through. So, I think our idea initially was probably that patients saw this as a much broader thing. We focus on treat-to-target, just thinking about disease activity. But I think it makes sense that actually what matters to patients is: “can I have a normal life? Can I do what I want to do?” And that is disease activity, but it's much more than disease activity. And so, I think it's not surprising that it does really explain that disconnect between when we're happy with somebody's disease control versus when they're happy with their disease control.

RN: What is the clinical significance of this research?

LC: I think we're using treat-to-target as an approach much more in the clinic, were thinking about implementing, usually physician designed targets, like minimal disease activity to make sure that we are controlling disease activity to get the best outcome for patients. But I think we need to go beyond that. We need to be thinking about controlling disease activity. But when that is controlled, and when patients still have significant disease impact, we need better evidence-based treatments, better access to treatments in a lot of healthcare settings, so that people can access physiotherapists, psychologists, and people who can support them beyond just the disease activity, but much more about the disease impact.

RN: Were there any limitations and or strengths of the study that you'd like to expand on?

LC: The analysis was done in the ReFlaP study database, which is a very large, international study run across over 20 countries across the world. I think it's really nice that we had good, generalizable data. All these patients are from real world clinics, they're not selected specifically for trials. And that data is from many, many different healthcare settings and countries. So, I think that's a really important strength. Obviously, we don't have any additional detail or qualitative work to go with this. It would be fascinating to go back to some of these people, where we have a number of measurements and questionnaires and be able to tie that in with additional qualitative work about how they really feel. It's very much focusing on the data that we had available to us. But I think alongside other publications, that gives us a fuller idea of where the patients are coming from in terms of their disease control, and how that mismatching clinic might occur.

RN: Does your team plan on doing any further research on this topic?

LC: I'm involved in a number of efforts trying to get funding at the moment to look at treating people beyond just disease activity. We have a study that we're about to run looking at implementing the questionnaire, which is 1 of the ones that came out as very highly predictive into routine practice. So the idea is that we'll supply people with iPads with the questionnaire on it, and then the patient can do that in the waiting room. And that can be discussed within the clinic consultation to try and help shared decision making to try and get doctors to realize what the issues are potentially outstanding for patients. And so that's about to start, slightly delayed by COVID. And we're also doing a lot of work developing additional materials for patients to be able to help them with some of these issues with a lot of behavioral factors, lifestyle changes things they can do to help themselves. And that's as part of work within the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) group.

RN: Well, thank you so much for speaking with me today. I really appreciate it.

LC: Thank you.

Be sure to check out Rheumatology Network's Expert Perspective on the Management of Psoriatic Arthritis with Christopher Parker, DO.