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Evaluation of a Pediatric-Adult Dyad Care Model for Transitioning Youth With Childhood-Onset Systemic Lupus
Tala El Tal1, Amanda Steiman2, Andrea Knight3
1T. El Tal, MD, MSc, Division of Rheumatology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto and Division of Rheumatology and Dermatology, Department of Pediatrics, Children's Hospital of Eastern Ontario, University of Ottawa, Ottawa.
Insights
This study shows a new model successfully transitions pediatric rheumatology patients with childhood-onset systemic lupus erythematosus (cSLE) to adult care. Over 90% of youth achieved key follow-up milestones in the adult clinic.
Area of Science:
- Rheumatology
- Pediatric Rheumatology
- Transition Medicine
Background:
- Successful transition from pediatric to adult healthcare remains a challenge for many young patients.
- Childhood-onset systemic lupus erythematosus (cSLE) requires specialized, long-term management.
- A novel pediatric-adult provider dyad transition model was developed for cSLE patients.
Purpose of the Study:
- To evaluate the effectiveness of a specialized transition model for youth with cSLE.
- To assess patient adherence to follow-up care in an adult rheumatology setting.
Main Methods:
- Retrospective chart review of cSLE patients transitioning from SickKids Transition Clinic (STC) to Young Adult SLE (YASLE) clinic.
- Assessment of transition success based on initial, subsequent, and sustained follow-up milestones.
- Data collected from August 2016 to September 2024.
Main Results:
- 164 out of 234 cSLE patients transitioned to the YASLE clinic.
- 98.2% achieved initial follow-up within one year; 97.5% had subsequent visits.
- 94.2% maintained care at the adult clinic, with 45.3% graduating from the YASLE program.
Conclusions:
- The pediatric-adult provider dyad transition model is highly effective for cSLE patients.
- Combined pediatric-adult care over four years facilitates successful long-term transition.
- The model ensures sustained engagement with adult rheumatology services for this vulnerable population.
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.
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