Does current research of juvenile idiopathic arthritis match research priorities of young people and their families? An examination of recent paediatric rheumatology research

Inclusion of stakeholders in the research priority setting is important to ensure patient-relevant research is produced. The aim of the study was to 1) conduct a systematic review to identify research priority setting activities in Juvenile Idiopathic Arthritis (JIA), and 2) compare research priorities identified by stakeholders in the review with those presented at recent pediatric rheumatology conferences. We conducted a systematic review of articles published on MEDLINE, Embase, PSYCINFO, and CINAHL between January 2010-May 2025. We included articles that identified stakeholder research priorities specifically for JIA, or included stakeholders that were predominantly JIA consumers. Data on the prioritization process were extracted using an appraisal checklist. The top five research priorities were collated into common topic areas and their ranking was examined according to each stakeholder group including patients, parents/carers and healthcare providers. Abstracts from conference proceedings for the European Pediatric Rheumatology Congress (PReS) (2023–2025) and the American College of Rheumatology (2023–2026) were examined and categorized into research priority groups. Of 127 studies identified, five studies examining broad research priorities for JIA were included. Priority topic areas identified were research into treatment and healthcare (30%), disease course and symptoms (27%), psychosocial and physical outcomes (24%), medication and side effects (11%), and disease etiology (8%). The top research priority identified by children and young people with JIA was psychosocial and physical outcomes, including relationships, school and work. Healthcare professionals identified research into disease course and symptoms, such as flares and pain, as the top priority. JIA research conducted and presented at recent conferences were mostly examining disease course (38.4%) and treatment and healthcare (27.9%). This review highlighted differences in stakeholder group research priorities. Emerging research conducted at recent international pediatric rheumatology conferences mirrored research priorities identified by healthcare professionals. Efforts need to be made to include patients and caregivers in the development of the research agenda, and answer research questions meaningful to consumers.