Evaluating Transition Readiness: Is Self-Report Valid as the Gold Standard?

OBJECTIVE: Determination of transitional readiness is an essential component of delivery of transition services to adolescents and young adults with chronic diseases, including those with inflammatory bowel disease (IBD). To date, this has been performed using the transition checklist (TC). However, clinical experience suggests the validity of the checklist may not be ideal. We sought to evaluate the validity of the TC among adolescents and young adults with IBD (AYA IBD). METHODS: We evaluated the validity of the TC compared with a skills-based practicum (TKSP) in a cross-sectional study using a real-world clinical cohort of AYA IBD. Extent of concordance between TC and TKSP was assessed using confusion matrices and calculation of Matthews correlation coefficients. RESULTS: Concordance between self-reported TC answers and TKSP performance varied based on skill/knowledge base assessed, ranging from 81.3% for mastery of knowing one's medical condition to 39.2% for mastery of knowing one's medication schedule and 29.3% for mastery of knowing how to refill medications. Matthews correlation coefficients were closer to random prediction than perfect correlation for all skills/knowledge tested. CONCLUSIONS: Self-reported TC answers lack sufficient concordance with TKSP performance. Our findings suggest that a TKSP should be performed to assess for transition readiness and to identify individual AYA IBD patient needs during the transition process.

Harnessing the Electronic Health Record to Distribute Transition Services to Adolescents With Inflammatory Bowel Disease.

OBJECTIVES: The aim of the study was to evaluate feasibility and utility of an electronic health record (EHR) activity to assess transitional readiness, deliver services to meet individual needs, and to track patient progress. METHODS: We developed a Transition EHR activity (TEA) to track patients through a standardized process where transition readiness is annually assessed and services distributed based on need. The process assesses transition skills starting at age 12 years and sets goals through shared decision-making, delivers resources according to need, reviews patients' personal medical histories, and documents healthcare transfer to adult gastroenterology. We piloted TEA among patients with inflammatory bowel disease (IBD) ages ≥12 years. Distribution to patients was measured and tolerability assessed via patient self-report evaluations. RESULTS: Since launch, TEA has been distributed to all eligible patients (N = 53) with a median age of 16 (14,18) years (median [IQR]), 62% male, 58% white, 26% Hispanic at our weekly dedicated IBD clinic. All have performed the transition skills' self-assessment and practicum, and set transition goals with their healthcare provider. Of these individuals, 41 (77%) participated in survey feedback. On a utility rating scale of 0 (not helpful at all) to 10 (very helpful), patients reported median (IQR) utility scores of 8 (7,10) for the transition readiness assessment, 9 (7,10) for transition resources provided, and 9 (7,10) for the medical history summary. Most (91%) would recommend TEA to other patients. CONCLUSIONS: TEA standardized delivery of resources among pediatric IBD patients and was well received and friendly to clinical workflow.