Care of the Adolescent Patient with Congenital Adrenal Hyperplasia: Special Considerations, Shared Decision Making, and Transition
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In brief
In brief
This article examines the evolving approach to managing adolescent patients with congenital adrenal hyperplasia, emphasizing shared decision-making and patient autonomy in surgical planning. It discusses the shift from routine infant surgery to delayed procedures that allow patients to participate in their own care decisions, while highlighting the importance of education and transition planning for young adults with CAH.
Written by the GCMD Library team from the article.
Publication date: Available online 20 September 2019
Source: Seminars in Pediatric Surgery
Author(s): Reeti Chawla, Meilan Rutter, Janet Green, Erica M. Weidler
Abstract
The care of infants with congenital adrenal hyperplasia has recently been examined and principles of shared decision making are being used to aid families at that crucial stage of care. Although there is no rigorous data to support delay of surgery, some families are choosing to wait until the patient can participate in choosing the course of care. Whether patients undergo reconstructive procedures or not in the newborn period, they may need or desire revision or primary surgeries as an adolescent or young adult. The first priority for one of these young, now more autonomous, patients is to help them take charge of their own care and develop an understanding of their medical needs. In the process of providing that education, providers and teams can connect to the patient, their caregivers and advocates in a way that allows further investigation into possible medical and surgical needs in a less pressurized situation.