Background/Purpose: Patients with childhood-onset rheumatologic diseases live well into adulthood and need effective transition from pediatric to adult medical providers. Fortunately, predictors of successful transition have been identified; using these to modify behaviors may increase transition success. Providers in the Texas Children’s Hospital (TCH) rheumatology clinic have developed a transition pathway, the BRIDGE (Baylor Rheumatology Initiative: Developing and Guiding Engagement), which includes use of an electronic medical record-based transition planning tool (TPT) to help with transition preparation. We assessed our ability to gauge patient self-reported transition readiness.

Methods: The validated, self-administered Adolescent Assessment of Preparation for Transition (ADAPT) survey generates 3 composite scores (out of 100) for counseling on transition self-management and prescription medications, and on transfer planning. Return adolescent patients aged 14-19 years were identified on the schedule at all 6 clinic locations regardless of diagnosis. An ADAPT survey was sent by email (English or Spanish) via a REDCap database on the morning of appointments between August-December 2018 and November-December 2019. Coordinators were generally present to assist patients with surveys. Surveys were scored and analyzed against demographic data.

Results: 749 patients received ADAPT surveys, 271 patients completed at least 1. Most respondents were 15-18 years old (84%), female (69%), and white (68%); 42% were Hispanic. English was used for 79% of surveys and 19% were in Spanish. Most patients were privately insured (56%) or covered by Medicaid/Children’s Health Insurance Program (39%). Survey respondents predominantly had juvenile arthritis (33%) and lupus (21%). Average initial ADAPT scores for all respondents were highest in counseling on prescription medication (64/100) and lower in counseling on transition self-management (34/100) and transfer planning (16/100). ADAPT scores increased with age, with the oldest patients (19 years) achieving the highest average scores on self-management (75/100), medications (82/100), and transfer planning (50/100). Average scores did not vary by age at diagnosis. 26 respondents replied to at least 2 surveys. Most of these respondents achieved the same or better scores on subsequent surveys. Average scores for each component were higher on subsequent surveys than on initial surveys: self-management (34/100 to 63/100), prescription medications (64/100 to 75/100), and transfer planning (16/100 to 41/100).

Conclusion: Patients with childhood-onset rheumatologic diseases need effective healthcare transitions to adult care. TCH rheumatology clinic has developed a transition pathway and is using a TPT to prepare patients for transition. We have developed a method to assess patient self-reported transition readiness. Participating patients have shown improvement over time in all domains measured by the ADAPT survey. Future directions include correlating outcomes to survey scores as patients transition care. Our ultimate goal is to create a sustainable and successful BRIDGE between pediatric and adult rheumatology care.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/assessing-patient-self-reported-transition-readiness-in-a-large-pediatric-rheumatology-center/