Assessment of Needs, Transition Readiness, and Satisfaction at the Young Adult with Rheumatic Diseases (YARD) Transition Clinic in British Columbia: A 2025 Updated Survey

Objectives Between 25% and 75% of youth with rheumatic diseases experience gaps in transition care.[1] The Pediatric Rheumatology Division at British Columbia Children’s Hospital (BCCH) established the Young Adult Rheumatic Disease (YARD) Clinic almost 40 years ago,[2] to address these challenges. This study aims to evaluate the perceived needs, transition readiness, and overall satisfaction of patients currently attending the YARD Clinic, 7 years after the initial survey by Jessa et al,[3] to ensure the clinic continues to meet the evolving needs of its patients.

Methods We conducted a cross-sectional descriptive study using a self-administered questionnaire including both closed- and open-ended questions. Eligible participants were all active YARD patients as of September 1st, 2025, who had attended at least 1 clinic visit. Recruitment was done via email and in person. Participants completed an anonymous 15-minute survey electronically (REDCap) or on paper. Quantitative data were analyzed using descriptive statistics, while qualitative responses underwent thematic analysis.

Results Of the 59 active YARD patients, 26 surveys (including 3 partial) were completed between September 1st and October 30th, 2025. The mean age was 19.15 ± 1.17 years; 69.2% (n=18) were female and diagnosed primarily with JIA (57.7%, n=15) or SLE (19.2%, n=5). Disease duration ranged from 1-5 years in 38.5% (n=10) to >10 years in 26.9% (n=7). Time as a YARD patient varied from < 6 months (26.9%, n=7) to > 24 months (38.5%, n=10). Most participants learned about YARD during their final year at BCCH (76.9%, n=20), mainly from their pediatric rheumatologist (96.2%, n=25). Overall satisfaction with care in the YARD clinic was high: 80.8% (n=21) were satisfied and 19.2% (n=5) were neutral. Participants felt comfortable discussing their conditions, contacting the team between visits, and reported receiving sufficient information about their disease and mental health resources. They also noted that YARD helped them gain independence and understand how their illness might affect their future. Suggested areas for improvement included access to multidisciplinary providers, communication around scheduling, and more information on reproductive health, substance use, and insurance. Responses to transition readiness questions (Table 1), were variable.

Conclusion Seven years after the previous evaluation, the YARD Clinic continues to provide effective, patient-centered transition care. Self-reported readiness was variable, reinforcing the need for structured support during transition. High satisfaction and perceived support highlight its valuable role in bridging pediatric and adult care. Addressing identified gaps through targeted quality improvement may further strengthen patients’ transition readiness and long-term outcomes.

References [1.] Canadian Rheumatology Association. https://rheum.ca/wp-content/uploads/2022/07/CRA-Transitions-Position-Paper_FINAL-ENGLISH.pdf [2.] Tucker L. Can Rheumatol Assoc J 2008;18:18-20. [3.] Jessa J. [Abstract] J Rheumatol 2020;47:1033.