Transition to Adulthood Through Coaching and Empowerment in Rheumatology (TRACER): Patient-Reported Outcomes of a Feasibility Randomized Controlled Trial

Objectives Youth with pediatric-onset rheumatic disease require longitudinal, often lifelong care for ongoing assessment and management, requiring transition to adult services around age 18. Healthcare transitions are a time of high needs and co-occur with complex psychosocial, emotional and biological changes in youth. A number of transition resources and programs have been proposed to support patients during this critical time.[1] Our study evaluated the feasibility of a multicenter randomized controlled trial (RCT) of a virtual 8-month Transition Coach Intervention (TCI),[2] for youth transitioning from pediatric to adult rheumatology care. Here, we report on the patient-reported outcome measures. Methods This feasibility RCT recruited youth aged 17-18 years with a pediatric-onset rheumatic disease seen at their last pediatric rheumatology visit at McMaster Children’s Hospital and Children’s Hospital in London. Participants were randomized to receive a Youth Transition Roadmap (YTR) only (standard of care), or YTR plus TCI - 8 monthly virtual coaching sessions covering topics from the YTR. At baseline, 8 months and 11 months, collected patient-reported outcomes included measures of transition readiness (Transition-Q, max 100) and PROMIS® Self-Efficacy for Managing Chronic Conditions, which assesses activities of daily living (ADLs), symptoms, medications and treatments, emotions, social interactions, and informational supports. Results Of 65 patients approached, 31 (48%) consented and 25 went on to participate (n=12 TCI group). Over 95% of TCI appointments were attended, and 80% of patients completed 8-month follow-up questionnaires. Enrollment was split almost equally between sites. At baseline, 23% of participants in the control group reported being “definitely ready” for transition to adult care, compared to 31% in TCI. At follow-up, comparable values were 10% and 73%, respectively. Mean (SD) Transition-Q scores for the control group at baseline, 8- and 11-month follow-ups were 65.6 (15.9), 73.4 (21.8) and 80.8 (15.5) compared to 71.6 (17.5), 80.1 (12.2) and 90.0 (9.6) for the TCI group, respectively. PROMIS Self-Efficacy scores showed that the TCI group had overall improvements at each timepoint across all domains except for ADLs. The control group showed less consistent improvement, with initial stagnation at 8 months, followed by improvement at 11 months across all domains (Figure 1). Figure 1 A and B: PROMIS Self-Efficacy scoring at baseline, 8-month, and 11-month follow up Conclusion Our results suggest that TCI provides an opportunity to improve skills and confidence in youth transitioning from pediatric to adult rheumatology care. This will inform planning a multicenter RCT to assess effectiveness of a TCI program in supporting youth in their transition to adult care. References [1.] Griffin K. Rheumatol Adv Prac 2024;8:rkae130. [2.] Reesor E. PLoS One 2024;19:e0295174.