Background/Purpose: The transition period from pediatric to adult-oriented rheumatology care is a high-risk time for disease flare and poor outcomes.  We previously demonstrated implementation of a structured transition program from 2020-2022 decreased the time to first adult rheumatology appointment compared to historical controls. Our current study analyzed additional data through 2024 and evaluate follow-up to the subsequent adult rheumatology visit to identify potential opportunies for improvement.   

Methods: In 2020 we implemented a specialized transition program structure utilizing dual adult/pediatric rheumatology physicians, the Bridge to Adult Care from Childhood for Young Adults with Rheumatic Disease (BACC YARD) Program.  An adult/pediatric rheumatologist joined the final pediatric rheumatology visit and then followed the patient in the adult rheumatology clinic.  Requested timing for first adult rheumatology visit was determined by joint decision between the adult/pediatric rheumatologist and the childhood pediatric rheumatologist. Follow up to the subsequent adult rheumatology visit (requested versus actual) was assessed and compared by t-test.  A Pareto chart was used to identify the most common causes for delayed ( >30 days) second adult rheumatology visit.  All historical control cohort patients (from between March 1, 2018 and March 1, 2020) identified had at least two pediatric rheumatology visits at Children’s of Alabama prior to transfer and were successfully transferred to University of Alabama at Birmingham (UAB) rheumatology.

Results: The BACC YARD program (7/2020-4/2024) included 162 young adult participants diagnosed with a rheumatic disease in childhood.  83% of participants successfully completed a pre-transfer visit at Children’s of Alabama and a post-transfer visit at UAB by 4/2024.  50% of the participants had a diagnosis of juvenile idiopathic arthritis and 27% had a diagnosis of systemic lupus erythematosus or similar connective tissue disease (Table 1).  The BACC YARD clinic has had 1 patient death and 11 patient pregnancies (6 of which prompted urgent transition to adult rheumatology).  There was a significantly shorter median interval between last pediatric and first adult visit in BACC YARD compared to the historical control cohort (147 days vs 261 days, respectively, p< 0.001; Table 2).  Of those who have attended a second adult rheumatology visit (N=125), 63% of patients (N=79) had visits scheduled within 30 days of their requested follow up time.  50% (N=23) of those attending their second adult rheumatology visit longer than 30 days after the requested date had a single interim canceled visit (Figure 1).

Conclusion: From 2020-2024, the BACC YARD Program significantly reduced median time to first adult visit compared to historical controls and more than half of the successfully transferred patients attended a 2^nd adult rheumatology visit on schedule.  Canceled visits and low clinic availability were the primary reasons for delays to second visit and provide opportunities for program improvement. 

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-bridge-to-adult-care-from-childhood-for-young-adults-with-rheumatic-disease-bacc-yard-program-a-pediatric-to-adult-rheumatology-transition-program-2024-updates/