Background/Purpose: Graduating from child and family-oriented to adult-oriented health care is a vulnerable time when youth with chronic disease drop out of, or disengage from, the healthcare system. For young adults with connective tissue diseases (CTD) in Vancouver, we developed a 3-phase “transition program” beginning in the multidisciplinary pediatric clinic; at end of high school patients transfer to a Young Adult Rheumatic Disease (YARD) clinic – a pediatric-adult hybrid-care transition clinic with no parental involvement; in 3-4 years they then transfer to adult care. This study describes healthcare use and disease outcomes of youth with CTD during the early phase of their transition through to the YARD clinic.

Methods: We conducted a retrospective chart review of patients who transitioned from pediatric care to the YARD clinic between 2013 and 2023. Comparative statistics were used to assess demographics, disease activity, and healthcare utilization (FU = follow-up visits, ED = emergency department, HA = hospital admission) one year pre- and post-transition. For study purposes, the first “transition” time point equates to the first YARD clinic visit.

Results: 42 patients were included (85.7% female) with systemic lupus erythematosus (SLE) (28/42), 66.7% juvenile dermatomyositis (14.3% linear scleroderma, 4.8% mixed connective tissue disease, and one patient each with cutaneous lupus, undifferentiated connective tissue disease, primary Sjogren’s, and systemic sclerosis. Mean transition age: 18 years (17.9-18). Patients attended an average of 4.19 FU visits pre-transition and 2.90 post-transition. The mean of missed rheumatology visits was 0.38 pre- and 0.41 post-transition (Table 1).For SLE patients, the median SLE Disease Activity Index (SLEDAI) scores were 4 pre- and 2 post-transition. Physician Global Assessment (PGA) scores were 1.14 pre- and 0.57 post-transition for all patients.ED visits occurred in 26.2% and 27.5% of patients pre- and post-transition, respectively, with 41.67% and 33.3% due to disease flare (Table 1). HA occurred in 11.9% and 7.7% pre- and post-transition, respectively, with 60% and 66.7% due to disease activity. There was no significant difference in ED or HA in the 12 months pre- vs. post-transition (p = 1.33 and 0.518). The YARD clinic received 40/42 (95.2%) patient referrals sent to the clinic. Post-transition, 30 patients remained in follow-up, 7 relocated or were transferred to a local physician, and 3 failed to show up despite repeated appointments.

Conclusion: In this cohort, initial transition from pediatric care to the YARD clinic was associated with stable ED use and HA rates. These findings suggest that our structured transition process is initially effective with minimal loss to follow-up and stable clinical outcomes. Our results highlight the need to evaluate the longer-term success of the YARD transition and subsequently after transfer to adult care.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/transition-in-focus-health-care-utilization-and-disease-status-in-youth-with-connective-tissue-diseases-a-single-center-experience-in-british-columbia-canada/