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The Transition to an Anterior-Based Muscle Sparing Approach Improves Early Postoperative Function but is Associated with a Learning Curve

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

Leslie Pitts¹, Alexandra Armstrong¹, Louise Fleming²

¹School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA.

Hormone Research in Paediatrics

|August 5, 2025

Summary

Improving healthcare transition (HCT) for congenital adrenal hyperplasia (CAH) requires addressing communication gaps and developing structured programs. Further research is needed to optimize long-term outcomes for emerging adults with CAH.

Keywords:

Adolescent health Congenital adrenal hyperplasia Endocrinology Healthcare transition Transition readiness

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Area of Science:

Pediatric Endocrinology
Adolescent Medicine
Health Services Research

Background:

Guidelines recommend structured pediatric-to-adult healthcare transition (HCT) for congenital adrenal hyperplasia (CAH).
Significant gaps exist in understanding transition experiences and long-term outcomes for emerging adults with CAH.

Purpose of the Study:

To examine existing research on healthcare transition for emerging adults with CAH.
To identify barriers and knowledge gaps in the HCT process for this population.

Main Methods:

Systematic literature search of PubMed, Scopus, and Embase databases.
Inclusion of 18 studies exploring HCT in individuals with CAH.
Categorization of findings into HCT readiness/communication, programs/outcomes, and experiences/considerations.

Main Results:

Barriers include clinician shortages, distance to care, and socioeconomic factors.
Knowledge gaps identified in patient/parent perspectives, transition readiness measures, long-term outcomes, intervention research, and self-management skills.
Effective strategies involve communication, structured programs, and readiness measures.

Conclusions:

Optimizing HCT for CAH requires addressing communication, structured programs, and readiness measures.
Challenges like inconsistent metrics, logistical barriers, and care dropout necessitate further research, tailored interventions, and advocacy.