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.
Diagnosis of congenital adrenal hyperplasia (any subtype or severity)
Age ≥16 years
Active follow-up within the pediatric endocrinology clinic
English-speaking
Significant cognitive impairment precluding participation
Inability to complete study procedures
Inability to provide informed consent/assent
This population will be recruited from our pediatric endocrinology clinic as available.
Cohort
Prospective
exposure to healthcare transition protocol
Other interventionCAH-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
assessment of CAH knowledge
Brief survey of CAH knowledge with Congenital adrenal hyperplasia knowledge questionnaire looking at the treatment of the condition and the mechanism of congenital adrenal hyperplasia. Minimum score 0; Maximum score 44; with 0 indicating lack of knowledge of CAH
Self-Management and Transition to Adulthood with Rx (Self-Management and Transition to Adulthood with Rx-parent) questionnaire regarding transtion readiness
This questionnaire assesses patient's readiness for movement to adult healthcare. minimum score of 0, maximum score of 90. 0 indicating patient is not ready for movement to the adult healthcare system.
Change in quality of life for patients with CAH
assessment of CAH quality of life with questionnaire (CAHQL). Scale from 0-100 with increasing scale indicating a higher quality of life.
number of participants that receive the emergency preparedness checklist
checklist to understand patient understanding of preparing for adrenal crisis
number of visits a participant requires for acute care
review of patient's use of acute care for adrenal insufficiency. We will count the number of times a participant has to use an ER or urgent care clinic within a 6 month time frame (inquiring at baseline, 6 month, and 12 month visit)
Assess satisfaction and experience survey
assessment of satisfaction and experience survey. 5 question survey of Likert scale ranging 1-5 with 5 indicating very satisfied.
themes regarding CAH healthcare transition
themes from focus groups from adolescents and young adults with CAH guardians/caregivers, and providers
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University of Alabama at Birmingham
Lead sponsor
Neurocrine Biosciences
Collaborator
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