A Scoping Review of Literature Exploring the Healthcare Transition of Individuals with Congenital Adrenal Hyperplasia.

Background: Despite guidelines emphasizing the importance of a structured pediatric-to-adult healthcare transition (HCT) for individuals with congenital adrenal hyperplasia (CAH), significant gaps remain in understanding the transition experiences and long-term outcomes of this population. This scoping review examines existing research on HCT for emerging adults with CAH.

Summary: PubMed, Scopus, and Embase databases were systematically searched to identify research exploring the HCT of individuals with CAH. Eighteen studies met the inclusion criteria. Findings were categorized as: (1) HCT readiness and communication, (2) HCT programs and outcomes, and (3) HCT experiences and considerations. Barriers hindering effective HCT include clinician shortages, distance to specialty care centers, and socioeconomic challenges. Knowledge gaps include patient and parent perspectives, a lack of validated transition readiness measures, insufficient long-term health outcome data, intervention research, and data on self-management skills. Addressing these gaps is essential to enhancing patient outcomes and continuity of care.

Key messages: This review highlights the importance of strategies, including effective communication, structured HCT programs, and transition readiness measures, to improve outcomes for individuals with CAH. Challenges, such as inconsistent metrics, logistical barriers, and high rates of care dropout, demonstrate the need for further research, tailored interventions, and advocacy to optimize HCT practices.