Creation of a Transition Clinic and Registry for Young Adults with Juvenile Idiopathic Arthritis: The Women’s College Hospital Experience

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Objectives Transfer from pediatric to adult healthcare for young adults with rheumatic conditions occurs during a period of significant change. Preparedness and self-management skills influence follow-up care—up to 50% may be lost to follow-up at time of transfer, risking poor health outcomes. Transition clinics can provide coordinated, developmentally appropriate continuity of care, where young adults are seen jointly by pediatric and adult rheumatologists during these vulnerable years. Our aim is to report on the creation of a young adult clinic dedicated to supporting the transition of individuals diagnosed with juvenile idiopathic arthritis (JIA), as well as a registry to enable research and quality improvement. Methods Discussions and needs assessment were conducted prior to establishing the clinic to determine its aims, patient population, capacity, infrastructure, workforce planning, location, and feasibility. The clinic was modeled after the Young Adult with Rheumatic Diseases clinic at BC Children’s Hospital as a shared-care clinic with pediatric and adult providers. To evaluate the clinic’s impact, a registry was created to collect data on attendees’ engagement and health outcomes. The registry was developed in collaboration with pediatric and adult teams. Results The Women’s College Hospital Young Adult Clinic opened in 2019, staffed by a pediatric and adult rheumatologist and an advanced-practice physiotherapy practitioner. From 2019-2025, the clinic has followed 225 patients. The JIA Young Adult Clinic Helping Transition (JIA YACHT) registry was created and modeled after the Canadian Arthritis Network Disease Impact and Outcomes (CANDIO) registry at The Hospital for Sick Children. Recruitment began in May 2025, and since inception, 65 participants have been enrolled. Of these, 52/65 (80%) were female, 63/65 (97%) were on medications, with a median swollen joint count of 0 (range: 0-14), median physician global assessment score of 3 (range: 1-8), median patient global assessment score of 2 (range: 1-8), and median pain score of 3 (range: 1-9). The median time from referral to first clinic visit for registry participants was 134 days. The registry has proven to be an effective tool for monitoring important health outcomes post transfer such as uveitis status. Conclusion The creation of a dedicated transition clinic and registry has provided a strategic approach to transferring young adults with JIA from pediatric to adult care. This first-in-Canada transition registry enables standardized, systematic monitoring and evaluation of post-transfer care processes, identification of practice gaps, and tracking of patient outcomes. These insights will inform best practices and support ongoing improvements in transitional care.

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