Comprehensive adolescent healthcare transition program for congenital adrenal hyperplasia: A quality improvement initiative

Abstract

Background and significance

Congenital adrenal hyperplasia (CAH) is a genetic condition impairing adrenal steroid production, requiring lifelong steroid replacement, leading to decreased quality of life and a shortened lifespan. Preparing and supporting adolescents with CAH to develop health-related knowledge, skills, and decision-making during the pediatric-to-adult healthcare transition (HCT) is a priority. Many adolescents with CAH do not receive adequate HCT and do not attend follow-up care after transfer to an adult setting. The Comprehensive Adolescent Healthcare Transition (CAH-T) program was developed using CAH care guidelines and the Got Transition Six Core Elements of Healthcare Transition approach.

Purpose

This quality improvement (QI) initiative aimed to evaluate clinicians’ utilization and acceptance of the CAH-T program for addressing the HCT needs of adolescents with CAH in a southeastern United States pediatric endocrine clinic.

Intervention

Baseline demographics, the Health Care Transition Feedback Survey for Clinicians, and the Current Assessment of Healthcare Transition Activities were measured using surveys adopted from Got Transition. Clinicians were educated on the CAH-T program and patient education materials. Following implementation, clinicians documented all CAH-T program-recommended interventions provided in the clinic. Surveys were reassessed using repeated measures.

Evaluation

Twenty-nine clinicians participated. Eight separate patients received 53 total CAH-T program-recommended interventions during the three-month observation period. Paired assessment of the Current Assessment of Healthcare Transition Activities scores increased from 15.29 ± 8.32 to 24.00 ± 6.11 (p = 0.018; r = 0.63). The Health Care Transition Feedback Survey for Clinicians mean scores increased from 2.75 ± 0.26 to 3.30 ± 0.43 (p = 0.018; r = 0.59). These measures indicate increased utilization of HCT services and acceptance of HCT value. Clinicians suggested that time limitations, English-only transition education materials, and lack of electronic medical record integration were significant barriers to HCT support.

Implications for practice

A structured HCT program ensures clinicians provide adolescents with CAH support and guideline-based care. The CAH-T program offers an example of developing and implementing an HCT program for adolescents with CAH. Integration in the electronic medical record will ultimately increase program sustainability.