Transition model eases move from paediatric to adult care for cSLE patients

A recent study has demonstrated the effectiveness of a structured paediatric-adult dyad transition care model in encouraging prompt initial attendance and ensuring continuity of care for patients with childhood-onset systemic lupus erythematosus (cSLE) during the critical transition from paediatric to adult healthcare.

“This transition model, incorporating 4 years of combined paediatric-adult care, demonstrated successful transition for youth with cSLE, with more than 90 percent achieving key milestones of initial and sustained follow-up in adult care,” the researchers said.

This retrospective chart review involved 234 patients with cSLE graduating from SickKids Transition Clinic (STC) between August 2016 and September 2023.

The research team used three milestones to assess transition success: initial follow-up at the Young Adult SLE (YASLE) Clinic at Mount Sinai Hospital (MSH) within 1 year, subsequent follow-up with >1 YASLE visit, and sustained follow-up at MSH. They reviewed data in September 2024.

Of the 234 patients with cSLE, 164 transitioned to the YASLE clinic. At STC, 19.5 percent of patients had active disease (SLE Disease Activity Index 2000 >4), and 13.4 percent had Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI) >1. [J Rheumatol 2025;52:1151-1158]

Nearly all patients (98.2 percent) achieved the first milestone, with 96.2 percent attending their first YASLE visit within 1 year (median time 3.5 months), while 97.5 percent met the second milestone attending >1 visit. By study end, many of these patients (94.2 percent) maintained care at MSH, with a median follow-up of 5.1 years, including 45.3 percent who graduated from YASLE.

“These results underscore the strength of this model rooted in collaborative care across all three milestones of transition, and communication between paediatric and adult rheumatologists and with the patients and their families,” the researchers said.

“This model provides a replicable framework for optimizing chronic disease care transitions, as its principles are not exclusive to SLE care,” they added.

Rheumatologists

One of the potential contributors to the success of the model is the pretransition interaction with adult rheumatologists and continued involvement of paediatric rheumatologists.

Previous studies have shown that early engagement with adult clinicians enhances clinic attendance and care retention, as well as promotes familiarity, trust, and emotional preparedness. [J Adolesc Health 2011;48:429-440; Pediatrics 2022;150:e2021055033; Pediatr Nurs 2011;37:325-328; J Pediatr Adolesc Gynecol 2020;33:255-259; Pediatrics 2018;142:e20182587]

Such interactions enable patients to set realistic expectations, address concerns regarding various care systems, and establish a clear point of contact for disease flare management. [Paediatr Child Health 2007;12:785-793]

“This proactive and familiar approach not only alleviates common barriers but also creates an environment of support that encourages progressive self-management,” the researchers said.

“The inclusion of a paediatric rheumatologist in the adult care setting during the acclimation period further supports this transition,” they added.

This approach provides a gradual adjustment period, which nurtures both confidence and continuity. [Paediatr Child Health 2007;12:785-793; BMJ 2005;330:1283-1284]