19 October 2022
Psoriatic arthritis register: understanding the condition better
The role of registers has never been more important to improve our knowledge of conditions and answer questions about caring for patients.
We manage the Psoriatic Arthritis Register which is run by the University of Aberdeen to monitor the condition and better understand patients’ responses to treatment.
We speak to research nurses, Amy Watson and Sally Gilroy, from York and Scarborough Teaching Hospitals NHS Foundation Trust. They are regular recruiters to the study and share their advice.
Why do you think the PsA register is so important?
Amy: I worked as a ward nurse for 10 years and I’d never heard of psoriatic arthritis. Since working with these patients I’ve recognised the psychological burden and how it affects their lives. For example, I’ve had young patients who are worried about wearing certain clothes or being thought of as contagious. We’ve had patients whose entire families are affected.
Sally: That’s why this study is vital to help everyone understand this condition better. It’s important we learn more about how the medications affect people. The register doesn’t require too much time from the patients, and it can make a huge difference. We’re both passionate about making the study a success.
How do you recruit patients?
Sally: Amy has developed an in-depth spreadsheet of all the consultants lists and we go through every single patient to find people who might be eligible. Then when the patient is in clinic, we take down eligibility forms to give to the relevant consultant. Once this has been filled in and returned to us, we send out patient information sheets and get them onto the study.
How do you work with consultants and nurses?
Amy: It’s been a big help getting all the consultants on board for completing the eligibility forms. Now we know we can send those forms to any consultant in the hospital, and they can send it back completed. It’s just a checklist that helps with recruitment.
Sally: Specialist rheumatology nurses have an important role to play. We’ve got a great relationship with them, and they are proactive at alerting us to patients interested in being involved.
How do you make things easy for patients?
Sally: At our Trust we work across multiple sites, so we can offer patients the chance to have their study appointments at the community stadium or our additional sites in Selby and Malton. The stadium is a great option as there is plenty of parking and nice facilities, so it feels less like a hospital environment.
Amy: Because Yorkshire is such a large geographical area, we’ve always got to have in mind that many of our patients could be coming from quite far away. It’s important to give them options for appointments near work or home.
How do you explain the study to patients?
Amy: I tell patients that this is one of the first studies to really find out about the real-world experiences and how this condition affects their day-to-day life. I focus on the questionnaire and present it as an opportunity for patients.
What are your top tips for other units?
- Get colleagues on board and tell them about the register. They only need to do a checklist that takes less than a minute to fill out and then we take over, so from their perspective it’s not time consuming.
- Be flexible with patients. Many of our patients work and need to come and see us early in the morning or after work. We always try to accommodate them.