Background/Purpose: Transition of adolescents with chronic healthcare needs to adult care may result in poor outcomes. We have developed a program to improve the transition of pediatric rheumatology patients to adult rheumatology providers, which includes periodic assessment of patient self-reported transition readiness using the validated Adolescent Assessment of Preparation for Transition (ADAPT) survey. Our long-term goal is to identify factors that can predict successful transition; here, we report initial findings following electronic medical record (EMR) automation of ADAPT delivery.

Methods: Return patients 14 years and older were surveyed, irrespective of diagnosis, from July 2021-November 2022. ADAPT survey distribution was automated for all clinic visits using the EMR. Patients/caregivers could respond during electronic clinic check-in, which is available for both in-person and telehealth visits. ADAPT responses were automatically collated using EMR data extraction on the first of each month. Three composite scores, out of 100, for (1) self-management, (2) prescription management, and (3) transfer planning were manually calculated from the ADAPT responses and compared across demographics. Mann-Whitney, Wilcoxon and Kruskal-Wallis tests were used to compare composite scores.

Results: 462 unique patients returned 670 surveys. 87% of returned surveys (586/670) were scorable for at least 1 composite score, and 401 patients (87%) returned a survey with at least 1 calculatable composite score. Most survey respondents were female (75%), aged 14-17 years (83%), Caucasian (69%), non-Hispanic (64%), and spoke English (90%). Overall mean scores for self-management, prescription management, and transfer planning on initial survey were 35 (n=401), 59 (n=288), and 16.6 (n=367), respectively. Scores for self-management (mean 20.4 at age 14 years, increasing to 63.6 at 18+ years) and transfer planning (mean 1 at age 14 years, increasing to 49 at 18+ years) improved across age (both p 0.0001), but scores for prescription management were high for all patients (mean 59 at age 14, 66 at 18+ years, p=0.0442). Scores did not differ by sex or race; Hispanic patients scored higher in self-management (44.5 vs. 30.7, p 0.0001). 97 patients (21%) completed 2 surveys, 39 patients (8.4%) completed 3 or more. The average time between surveys 1 and 2 was 4 months (range 1 day-16 months). There was no difference in this timeframe in self-management (33 vs. 35.3, p=0.444, n=87) or prescription management (60 vs. 58.6, p=0.908, n=54), but there was an increase in scores for transfer planning (13.6 vs. 21, p=0.008, n=90).

Conclusion: In our rheumatology transition program, patient self-reported transition readiness is assessed using the ADAPT survey. Analysis thus far indicates participation in the transition pathway can rapidly improve transfer planning scores; however, opportunities remain to improve readiness in all domains. We look forward to distributing surveys in Spanish, a current EMR limitation. In the future, we will assess which aspects of readiness correlate with successful transfer to adult care.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/rheum-to-improve-patient-reported-transition-readiness-in-a-large-pediatric-rheumatology-clinic/