Evaluation of a Healthcare Transition Protocol for Patients With Congenital Adrenal Hyperplasia

Study Purpose and Rationale

Congenital adrenal hyperplasia (CAH) is a complex, lifelong endocrine disorder that requires continuous glucocorticoid replacement, stress-dosing during illness, and ongoing monitoring for metabolic, reproductive, and adrenal complications. Adolescents and young adults face substantial challenges maintaining these self-management responsibilities during the transition from pediatric to adult care, a period consistently associated with decreased adherence, reduced clinic attendance, lapses in emergency preparedness, and preventable adrenal crises. Despite these risks, there are currently no structured, evidence-informed transition programs tailored specifically to the needs of individuals with CAH.

The purpose of this study is to evaluate the feasibility, acceptability, and preliminary impact of implementing the Comprehensive Adolescent Healthcare Transition (CAH-T) program for adolescents and young adults with CAH. By combining structured education, readiness assessment, emergency preparedness training, and coordinated transfer to adult endocrinology, this mixed-methods pilot aims to strengthen self-management skills, improve continuity of care, and reduce acute health events. Findings will inform refinement of the CAH-T model and provide essential pilot data needed to support future multi-site implementation.

Objectives and Hypotheses

The overall objective of this mixed-methods feasibility study is to evaluate the implementation and preliminary effectiveness of the Comprehensive Adolescent Healthcare Transition (CAH-T) program for adolescents and young adults with congenital adrenal hyperplasia (CAH). The study aims to determine whether the intervention can be feasibly delivered in a pediatric endocrine clinic, is acceptable to patients and caregivers, and produces early improvements in transition-related outcomes.