Development of Healthcare Transition for Patients With Congenital Adrenal Hyperplasia

The purpose of this study is to implement and evaluate the feasibility and acceptability of a structured healthcare transition program for adolescents and young adults with congenital adrenal hyperplasia (CAH). The study will also examine preliminary effects of the program on transition readiness, disease-specific self-management knowledge, emergency preparedness, continuity of endocrine care, and health-related quality of life as participants transition from pediatric to adult healthcare services.

Inclusion Criteria: YA Participants * Diagnosis of congenital adrenal hyperplasia (any subtype or severity) * Age ≥16 years * Active follow-up within the pediatric endocrinology clinic * English-speaking * Cognitively able to complete questionnaires with or without assistance * Anticipated ability to participate in CAH-T visits during the study period Caregiver Participants * Parent, guardian, or primary support person of an enrolled AYA participant Provider Participants * Pediatric endocrinologists, nurse practitioners, or transition-related clinical staff involved in CAH care for at least 6 months Exclusion Criteria: * Significant cognitive impairment precluding participation * Inability to complete study procedures * Inability to provide informed consent/assent