Care of the Adolescent Patient with Congenital Adrenal Hyperplasia: Special Considerations, Shared Decision Making, and Transition

Topic overview

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.

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