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Mapping the future: identifying research priorities in rheumatoid arthritis with the James Lind Alliance approach
Kristine Røren Nordén1, Anna Fryxelius2, Ingrid Fjeldheim Bånerud3
1Health Services Research and Innovation Unit, Center for Treatment of Rheumatic and Musculoskeletal Diseases (REMEDY), Diakonhjemmet Hospital, Postboks 23 Vinderen, Oslo, 0319, Norway. kristineroren.norden@diakonsyk.no.
Background:
Considerable knowledge gaps remain regarding the cause, prevention, and management of rheumatoid arthritis (RA), with limited systematic effort to establish research priorities that truly align with the preferences of those impacted by RA.
Objectives:
To identify and prioritize unanswered questions about RA, capturing insights from people living with RA and healthcare professionals involved it its management.
Methods:
A James Lind Alliance (JLA) Priority Setting Partnership was established and followed six steps: (1) form a steering group, (2) define scope, (3) collect evidence uncertainties using focus groups, (4) collate evidence uncertainties and verify by checking existing research, (5) shortlist evidence uncertainties in an online survey, and (6) identify the top 10 research priorities through a priority-setting workshop.
Results:
A total of 212 questions were generated from three focus group interviews and distilled into 36 questions for a survey distributed to people with RA and healthcare professionals. Among 554 responses (mean age 58 [SD 13] years; 481 [87%] women), 449 (81%) identified as people with RA, and 105 (19%) as healthcare professionals, with some reporting dual roles. The ranking process resulted in a shortlist of 26 questions, which were further narrowed down to the top 10 research priorities. The top 10 research priorities addressed strategies for RA prevention, rapid diagnosis, identifying effective treatments, reducing treatment side effects, and holistic management approaches.
Conclusion:
Adopting the JLA method, this study mapped out core research priorities in RA, offering valuable insights that can help researchers, policymakers, and funders align future RA research with patient and clinical needs.
Clinical Trial Number:
Not applicable.
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