Evaluation of a Healthcare Transition Protocol for Patients With Congenital Adrenal Hyperplasia
University of Alabama at Birmingham
Summary
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.
Description
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 risk…
Eligibility
- Age range
- 16+ years
- Sex
- All
- Healthy volunteers
- Yes
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…
Interventions
- Otherexposure to healthcare transition protocol
CAH-T Curriculum Visits CAH-T Visit 1 (V1) CAH-T Visit 1 will occur approximately 3 months after enrollment and will include: * Review of CAH disease management * Stress dosing education * Emergency hydrocortisone instruction * Medical alert education * Teach-back demonstration of emergency injection technique * Discussion of adherence, mental health, fertility/sexual health, bone health, and cardiometabolic health * Introduction to healthcare transition concepts * Development of individualized transition goals For participants aged ≥18 years: * Identification of adult endocrinology provider * Development of transfer plan * Medical summary review/update Relevant educational materials are included in attachments. CAH-T Visit 2 (V2) CAH-T Visit 2 will occur approximately 6 months after enrollment and will include: * Reinforcement of CAH self-management concepts * Review of emergency preparedness * Review of transfer readiness * Finalization of transfer planning
Location
- University of Alabama at BirminghamBirmingham, Alabama