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Development of Healthcare Transition for Patients With Congenital Adrenal Hyperplasia

Not Yet RecruitingN/A

Sponsor: University of Alabama at Birmingham

Conditions: Congenital Adrenal Hyperplasia

Interventions: exposure to healthcare transition protocol

Countries: United States

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.

Eligibility overview

Sex: ALL

Age: 16 Years to —

Healthy volunteers: Yes

Study type: OBSERVATIONAL

Eligibility criteria

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

Locations (1)

Birmingham, Alabama, United States