Dr Laura Coates, Associate Professor and Senior Clinical Research Fellow at NDORMS, led the process which involved people living with psoriatic arthritis (PsA) and their carers working together with clinicians from the British Psoriatic Arthritis Consortium (BritPACT) to answer some of the most important research questions in PsA.
The work was supported by the James Lind Alliance, who have an established process for setting up priority setting partnerships (PSPs) to unearth the issues that matter the most to patients and clinicians.
Psoriasis is a chronic skin condition affecting about 3% of Europeans and North Americans, and of those 15 - 30% of people will go on to develop PsA. A chronic, complex disease PsA causes joints to become inflamed and painful and requires high levels of self-management from those living with it.
"It's crucial to involve patients and the public in research. They understand their condition more than anyone and can to help us identify areas where there may be gaps in their management," said Laura. "We are very grateful to all the patients who contributed to this process which will help us prioritise future PsA research in the UK."
Funded by the British PsA Consortium (BritPACT) and supported by NIHR Oxford Biomedical Research Centre (BRC,) the three-stage process began with an online survey to identify PsA questions, asking, "What do you think are the most important unanswered questions in psoriatic arthritis research?". The questions were checked against existing evidence to establish "true uncertainties" and grouped as "indicative questions" reflecting the overarching themes.
Then a second online survey ranked the "true uncertainties" by importance, and finally, a workshop including people living with PsA and clinician stakeholders finalised the top 10 research priorities.
The top priority was 'understanding the best strategy for managing patients with psoriatic arthritis including non-drug and drug treatments' followed by questions around diagnosis, prognosis, outcome assessment, flares, and comorbidities.
The full list can be found in Rheumatology Research.
Listen to Laura on the 'Talking Rheumatology Research' podcast