Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Mar 21:2:100057.
doi: 10.1016/j.hctj.2024.100057. eCollection 2024.

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

Jocelyn Dennis  1 , Leslie Pitts  1 , Leen Matalka  2 , Lauren C Mays  1
Affiliations

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

Jocelyn Dennis et al. Health Care Transit. .

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.

Keywords: Congenital adrenal hyperplasia; Healthcare transition; Quality improvement.

PubMed Disclaimer

Conflict of interest statement

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Jocelyn Dennis, Leslie Pitts, Leen Matalka, and Lauren Mays reports financial support was provided by Alabama League of Nursing. Leslie Pitts reports a relationship with Eton Pharmaceuticals Inc that includes: consulting or advisory, speaking and lecture fees, and travel reimbursement. Leslie Pitts, previously employed by Children’s of Alabama Pediatric Endocrinology Clinic. Leen Matalka is currently employed as an attending physician at Children’s of Alabama Pediatric Endocrinology Clinic.

Figures

Fig. 1
Fig. 1
Comprehensive Adolescent Healthcare Transition [CAH-T] Program Overview. This flow diagram displays the steps clinicians should follow when providing transitional care to adolescents and emerging young adults. The program starts at age 12 and ends between ages 18 and 21, with evaluations at one month and three to six months after the transfer to adult care.
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. Bachelot A. Transition of care from childhood to adulthood: congenital adrenal hyperplasia. Endocr Dev. 2018;33:17–33. doi: 10.1159/000487523. - DOI - PubMed
    1. Claahsen-van der Grinten H.L., Speiser P.W., Ahmed S.F., et al. Congenital adrenal hyperplasia-Current insights in pathophysiology, diagnostics, and management. Endocr Rev. 2022;43(1):91–159. doi: 10.1210/endrev/bnab016. - DOI - PMC - PubMed
    1. Witchel S.F. Congenital adrenal hyperplasia. J Pedia Adolesc Gynecol. 2017;30(5):520–534. doi: 10.1016/j.jpag.2017.04.001. - DOI - PMC - PubMed
    1. Navarro-Zambrana A.N., Sheets L.R. Ethnic and national differences in congenital adrenal hyperplasia incidence: a systematic review and meta-analysis. Horm Res Paediatr. 2022 doi: 10.1159/000526401. - DOI - PubMed
    1. Chawla R., Rutter M., Green J., Weidler E.M. Care of the adolescent patient with congenital adrenal hyperplasia: special considerations, shared decision making, and transition. Semin Pedia Surg. 2019;28(5) doi: 10.1016/j.sempedsurg.2019.150845. - DOI - PMC - PubMed

LinkOut - more resources