A Study of a Virtual Education-Based Transition Intervention to Improve Transition Readiness in Adolescent and Young Adults With Congenital Adrenal Hyperplasia

Study Description: Health Care Transition (HCT) is defined as planned movement of chronically ill youth and young adults from a child to an adult model of care. HCT initiatives aim to facilitate the transition process and reduce commonly observed complications associated with poor transition such as decreased health literacy, poor treatment adherence, discontinuity of care and poor medical outcomes. The NIH Clinical Center is a unique environment where children with rare diseases such as Congenital Adrenal Hyperplasia (CAH) are often followed longitudinally into adulthood. Rare diseases are understudied and few studies have investigated effective ways of delivering HCT focused education to improve transition readiness. This is a pilot, randomized controlled trial that will assess the feasibility and preliminary efficacy of a virtual education-based transition intervention to improve transition readiness in adolescents and young adults with CAH. We hypothesize that the virtual education-based transition intervention will be feasible and participants in the intervention arm, will have better transition readiness score, disease outcomes and quality of life as compared to participants who received usual care. Objectives: Primary objective: To assess the feasibility of a virtual education based transition intervention in adolescents and young adults with CAH. Secondary Objective: To assess preliminary effectiveness of a virtual education-based transition intervention on measures of transition readiness. Endpoints: Primary Endpoint: a) study participant compliance rate of \>= 67% with virtual education-based transition intervention, and b) feasibility of collecting all study questionnaires from \>=75% of participants at all time periods. Secondary Endpoint: The change in baseline to 12 months in the University of North Carolina (UNC) Trxansition Index score.