Background/Purpose: Success of transition from pediatric to adult care depends on many factors. Various scores for transition readiness have been developed, including some designed to capture patient self-reported readiness and others that focus on program specific parameters. However, few patient-level transition success scores exist. Without such a score, it is difficult to assess the impact of programmatic interventions to improve the process of transition on transition outcomes. We created a novel transition success score for pediatric rheumatology patients.

Methods: Pediatric rheumatologists and adolescent health experts were consulted. Four components were included in the score: attending the first adult appointment in the time frame designated by the pediatric rheumatologist (component 1), refilling medications within 3 months of the first adult appointment (component 2), attending a second adult appointment (component 3), and no rheumatology-related emergency department visits in the first year after transition (component 4). Scores were determined via electronic medical record (EMR) review. Each component was weighted as one-quarter of the total transition success score. The few patients who transitioned off medications were scored successfully for component 2.

Results: From 2017-2024, we identified 357 patients with a final visit to pediatric rheumatology using direct provider notification of transition to adult rheumatology clinic and EMR review. Of those, 199 were able to be scored for transition success. Some patients were unable to be scored due to subsequent healthcare details being inaccessible via EMR (n=73), others because it was still < 1 year since the final pediatric appointment (n=59), and others for various reasons such as dismissal from the need for future rheumatology followup (n=26). The average age at transition was 18.6 years. 73/199 (37%) patients scored 100 (ie achieved all 4 components of successful transition) and 77/199 (39%) scored 75. Only 3 patients (1.5%) scored 0. The average score was 74.3%. When considered by component, 114 patients (57%) met component 1, 151 (76%) met component 2, 160 (80%) met component 3, and 166 (83%) met component 4.

Conclusion: We developed a transition success score and applied it to patients who had transitioned from our pediatric rheumatology clinic. Although 150/199 patients (75%) fulfilled 3 or 4 out of 4 components of successful transition, we were unable to document attendance at a second adult rheumatology appointment for a surprising 20% of transitioned patients. Our next steps include correlating components of our transition program, including demographics, transition planning, self-reported transition readiness, and receipt of a transition summary letter, with the transition success score to better understand what factors predict successful transition.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/transition-success-of-pediatric-rheumatology-patients-a-novel-scoring-system/