Background/Purpose: The transition period for adolescents transferring from pediatric to adult care is a recognized period of vulnerability. In rheumatology, the majority of adolescents reach adulthood with ongoing disease activity, and patterns of healthcare utilization during this time remain poorly understood. The aim of this study was to evaluate how rheumatology patients interact with the healthcare system during the period of transfer from pediatric to adult care and assess how systemic factors may affect transfer outcomes.

Methods: A retrospective chart review was conducted of patients aged 18-27 who transferred from pediatric to adult rheumatology between 2020 and 2023 at a single tertiary care center without a formal transition program. Data collected included sociodemographic characteristics, healthcare utilization during the transition period, and logistical aspects of the transfer process. Descriptive statistics were used to analyze the data.

Results: A total of 230 young adults with rheumatic disease transferred from pediatric to adult rheumatology in our study period. The cohort included 118 (51.3%) patients with JIA, 39 (17%) with SLE, 33 (14.3%) with connective tissue disease (excluding SLE), 20 (8.6%) with vasculitis, 9 (3.9%) with autoinflammatory disease inclusive of systemic JIA, and 11 (4.7%) with other diagnoses (sarcoidosis, antiphospholipid syndrome, chronic recurrent multifocal osteomyelitis, idiopathic uveitis). An average of 276 days (median 170 days) elapsed between the final visit with pediatrics and the first adult visit; this is more than twice the average duration between visits before (every 114 days) or after (every 122 days) transfer. Almost half (47.8%) of patients had more than six months and 20% had over a year elapse prior to establishing with adult rheumatology. During this period of transfer, 28 (12.1%) presented to the emergency department and 27 (11.7%) were prescribed a burst of corticosteroids. Eight (3.5%) patients did not have a second adult rheumatology visit.

Conclusion: The results of our review demonstrate a need for greater patient support in their transfer between seeing pediatric and adult rheumatologists. When connected with a physician, patients saw their rheumatologist about every 3-4 months, but during the transfer period, the average patient went longer than twice this duration without seeing a rheumatologist. Though the ramifications of this delay are not yet clear, the rates of emergency department utilization and steroid prescriptions during transition suggest that ensuring a more expedited and supported transfer process may be important for maintaining disease control and improving patient satisfaction. This study lays the groundwork for the development of a formalized transition program and provides a baseline for evaluating its impact, reinforcing the need for more structured support during the vulnerable period of transferring from pediatric to adult rheumatologic care.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/rheumatology-transitions-of-care-patient-stability-and-follow-up-at-a-single-center/