Background/Purpose: The transition from pediatric to adult care poses unique challenges for patients with childhood-onset disease, many of whom were young at presentation and do not recall key events surrounding their diagnosis and treatment. This may contribute to knowledge gaps and reduced self-efficacy, increasing the risk for lapses in care and disease flares during transition. We have developed a pediatric rheumatology transition program and implemented a comprehensive initiative, including a formal transition policy, systematic tracking of patients, use of a structured planning tool, and self-assessment of transition readiness. We have also introduced a formal acknowledgment at the final pediatric visit, including a personalized transition summary letter to support continuity of care and minimize information loss.

Methods: We conducted a retrospective review to assess delivery of transition summary letters to patients with childhood-onset rheumatic disease transitioning to adult care since the start of our program in 2017. We reviewed the electronic medical record of transitioned patients, identified through provider notification or chart review, to determine whether a transition summary letter was provided. In February 2023, we initiated reminder emails to providers—initially biweekly, then weekly—listing all transition-age patients with upcoming visits and reminding providers to discuss transition. Patients aged 17 and older were highlighted due to their impending transfer. Our aim was to increase distribution of summary letters compared to prior years and ensure at least 90% of transitioning patients received a letter post-intervention.

Results: From 2017-2024, 278 patients transitioned to adult rheumatology and had data accessible for analysis. Overall, 149/278 (53.5%) received a transition summary letter. By year, the percentage of patients that received a transition summary letter ranged from 0% in 2018 to a peak of 74% in 2024. Prior to the implementation of our reminder emails in 2023, 66/153 patients received transition summary letters (43%). After implementation of our initiative, 83/125 patients received transition summary letters (66%). Overall, the distribution of transition summary letters trended upward (Figure 1).

Conclusion: Many patients experience information loss as well as lapses in access to care during the transfer from pediatric to adult providers. For this project, we built upon the transition pathway created within pediatric rheumatology to consolidate information for adult providers through a transition summary letter written by the pediatric rheumatology provider. Overall, 53.5% of patients received a transition summary letter, and the distribution to patients has trended upwards over time. Following the institution of a weekly reminder email, 23% more patients received transition summary letters compared to years prior. Our next steps include developing interventions to increase the frequency of transition summary letters toward our goal ( >90%) and to longitudinally follow these patients to evaluate the impact of this intervention on successful transfer and continuity of care.

Bar Chart displaying the percentage of patients that received transition summary letters each year (based on the date of their last pediatric visit). The intervention began in February of 2023.

« Back to ACR Convergence 2025

ACR Meeting Abstracts - https://acrabstracts.org/abstract/documenting-transition-a-review-and-intervention-to-increase-the-receipt-of-transition-summary-letters/