Adult endocrinologists' perspectives on transitioning adolescent patients with congenital adrenal hyperplasia

J Pediatr Endocrinol Metab. 2024 Jul 16;37(8):722-729. doi: 10.1515/jpem-2024-0158. Print 2024 Aug 27.

Abstract

Objectives: The study aimed to evaluate adult endocrinologists' perspectives on caring for patients with congenital adrenal hyperplasia (CAH) and views on their transition from pediatric to adult care.

Methods: An online survey was conducted among adult clinical endocrinologists at Harvard Medical School-affiliated hospitals from March to October 2022.

Results: Most participants (25/34, 73.5 %) treat patients with CAH and expressed moderate to high confidence (23/32, 71.9 %) in their care. Those that did not treat or accept referrals cited insufficient expertise, knowledge, and resources as reasons. Only half of respondents correctly answered at least 50 % of standard of care questions. The main transition of care barrier identified was the absence of standardized policies (12/34, 35.3 %).

Conclusions: Participants, though involved in care of patients with CAH, had varied responses to standard of care questions and transition of care barriers, emphasizing the need for standardized transition protocols and additional training to ensure up-to-date clinical knowledge.

Keywords: congenital adrenal hyperplasia; differences in sex development; health education; health equity; intersex.

MeSH terms

  • Adolescent
  • Adrenal Hyperplasia, Congenital* / psychology
  • Adrenal Hyperplasia, Congenital* / therapy
  • Adult
  • Attitude of Health Personnel
  • Endocrinologists* / psychology
  • Female
  • Humans
  • Male
  • Practice Patterns, Physicians' / statistics & numerical data
  • Prognosis
  • Surveys and Questionnaires
  • Transition to Adult Care*