成年内分泌学家对先天性肾上腺皮质增生症青少年患者过渡的看法。
Adult endocrinologists' perspectives on transitioning adolescent patients with congenital adrenal hyperplasia.
机构信息
Department of Obstetrics and Gynecology, Brigham and Women's/Massachusetts General Hospital, Boston, MA, USA.
Division of Pediatric Endocrinology and Diabetes, Department of Pediatrics, University of California, San Francisco, CA, USA.
出版信息
J Pediatr Endocrinol Metab. 2024 Jul 16;37(8):722-729. doi: 10.1515/jpem-2024-0158. Print 2024 Aug 27.
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.
目的
本研究旨在评估成人内分泌学家在照顾先天性肾上腺增生症（CAH）患者方面的观点，以及他们对从儿科到成人护理过渡的看法。
方法
2022 年 3 月至 10 月，对哈佛医学院附属医院的成人临床内分泌学家进行了在线调查。
结果
大多数参与者（25/34，73.5%）治疗 CAH 患者，并对其治疗表示中等至高度信心（23/32，71.9%）。那些不治疗或不接受转介的人则表示缺乏专业知识、知识和资源是原因。只有一半的受访者至少正确回答了 50%的标准护理问题。确定的主要护理过渡障碍是缺乏标准化政策（12/34，35.3%）。
结论
尽管参与者参与了 CAH 患者的护理，但他们对标准护理问题和护理过渡障碍的反应各不相同，这强调需要标准化的过渡方案和额外的培训，以确保最新的临床知识。
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