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While several instruments have been developed to evaluate AYA preparation for and/or readiness for transition to adult care, these have not been previously correlated with transfer outcomes among youth with rheumatologic diseases. Despite increased attention to high-quality transition care, measuring preparation for transition and evaluating transfer outcomes remain challenging. There are increasing efforts to bring comprehensive transition care to AYA with rheumatologic diseases, though many pediatric rheumatology programs lack formalized transition pathways. The risks of this care transition period are well described in AYA with rheumatologic diseases, including increased disease flares, missed follow up visits, medication non-adherence, and even increased mortality. Tracking transition preparation over time may provide practices with information on areas of highest need for transition guidance and predict successful transfer among AYA with rheumatologic disease.Īdolescents and young adults (AYA) are at high risk for poor outcomes and gaps in care when transitioning from pediatric to adult care.
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Our single-center pilot study demonstrated that longitudinal assessment of transition preparation is feasible and that scores are significantly associated with care transfer outcomes. Those who successfully completed care transfer were older, had completed higher levels of education, and had significantly higher baseline transition preparation scores compared to those with no transfer arranged or planned visit only. Most follow-up respondents (n = 19, 61%) had not yet completed care transfer 4 (13%) had arranged a visit with an adult rheumatologist and 8 (26%) had fully transitioned to adult care. Patient report of transition counseling increased following written transition policy implementation, though these results were not statistically significant in our small cohort.
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31 of 77 patients completed the follow-up survey (response rate 40%). We implemented a written transition policy at our pediatric rheumatology center and evaluated preparation for transition among AYA 16 and older before and after distribution. However, tools for evaluating transition readiness and assessing the impact of transition interventions are limited. Adolescents and young adults (AYA) with rheumatologic diseases are at high risk for poor outcomes and gaps in care when transitioning from pediatric to adult care.