Evaluation of a Pediatric-Adult Dyad Care Model for Transitioning Youth With Childhood-Onset Systemic Lupus Erythematosus.

Abstract

Objective: Only 50% of pediatric rheumatology patients transition successfully to adult care. We developed a pediatric-adult provider dyad transition model for youth with childhood-onset systemic lupus erythematosus (cSLE). This model transitions patients from the SickKids Transition Clinic (STC) to the Young Adult SLE (YASLE) Clinic at Mount Sinai Hospital (MSH) at age 18, where they receive combined pediatric-adult care for 4 years before transitioning to adult care. We aimed to evaluate the success of this transition model.

Methods: A retrospective chart review was conducted for patients with cSLE graduating from STC between August 2016 and September 2023. Transition success was assessed using 3 milestones: (1) initial follow-up at the YASLE clinic within 1 year; (2) subsequent follow-up with > 1 YASLE visit; and (3) sustained follow-up at MSH. Data were reviewed as of September 2024.

Results: Among 234 patients with cSLE, 164 transitioned to the YASLE clinic. At STC, 19.5% had active disease (SLE Disease Activity Index 2000 > 4), and 13.4% had Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI) > 1. The first milestone was achieved by 98.2%, with 96.2% attending their first YASLE visit within 1 year (median time 3.5 months). The second milestone was met by 97.5% attending > 1 visit. By the study end, 94.2% of patients maintained care at MSH, with a median follow-up of 5.1 (IQR 2.7-7.1) years, including 45.3% who graduated from YASLE.

Conclusion: This transition model, incorporating 4 years of combined pediatric-adult care, demonstrated successful transition for youth with cSLE, with > 90% achieving key milestones of initial and sustained follow-up in adult care.