22 September 2022
We caught up with consultant rheumatologist, Dr Nicola Gullick, and research practitioner, Susanne Armitage, from University Hospitals Coventry and Warwickshire NHS Trust, about their experience of the PsA register.
Psoriatic arthritis register: top tips for recruiting patients
We want to make sure that the psoriatic arthritis register contains comprehensive information about patients with the condition from across the UK.
We’re hoping to encourage even more hospitals to take part in the register which is a crucial way to assess the impact of the condition on patients and the effect of different treatment options.
Why do you think the PsA register is so important?
Nicola: We know from clinical trials that drugs are effective, but the patients who are recruited to trials are often very different to the patients we see in clinic. It's important to have information on real-life patients to assess outcomes for the long term.
How do you recruit patients to the register?
Nicola: I have a specialist psoriatic arthritis clinic, so those patients are approached when we are starting new medications. We also ask our specialist nurses and consultants to alert us if they’re seeing patients in other clinics. We find patients for other research that way too, including the RA register.
Do patients like being involved?
Susanne: The majority are keen and want to help, even though sometimes they’re feeling unwell themselves.
Nicola: It’s unusual for someone to say no to the registry studies. We find that patients want to share their experience.
What else helps recruitment?
Nicola: We have regular meetings as the department, and we always update on which research studies are actively recruiting.
Susanne: Our consultants and nurses are proactive, and they’ll tell me they’ve seen a newly diagnosed patient or a patient going on to a biologic.
How have you made recruitment part of your normal activities?
Nicola: We’ve found that if we talk about research, then more people will remember it's happening, and it then becomes a natural process to approach patients. Over time colleagues have learnt that we always get back to the patients and deliver on what we say we're going to deliver.
Susanne: The nurses see me around the clinic and the wider department. That helps to remind them, and they’ll stop and talk to me about potential patients.
How do you make it easy for patients?
Susanne: We try not to bring them up to the hospital just for research. Quite often they’ll be coming for a nurse appointment, a blood test or x-ray, so we catch them then. I might ask them to come a little bit early to fill in the questionnaires or they have the option to take them home.
What is your top advice for other units?
Susanne: The University of Aberdeen team who oversee the PsA register are really helpful. If you have any queries, they come back to you quickly so do talk to them.
Nicola: When the register was originally set up, there was a bit of anxiety about the numbers of additional assessments that might not be routine for everyone, but these are the ones we already do in our PsA clinic. We’ve trained Susanne to do some of the assessments for patients coming to other consultants’ clinics.
Susanne: I’m trained to do the 66/68 joint count, the psoriasis assessment and the enthesitis and dactylitis assessments. It helps to speed things along.
The BSR Psoriatic Arthritis Register is a UK-wide register which is run by the University of Aberdeen on our behalf.