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Semin Pediatr Surg. 2019 Oct;28(5):150845. doi: 10.1016/j.sempedsurg.2019.150845. Epub 2019 Sep 20.

Care of the adolescent patient with congenital adrenal hyperplasia: Special considerations, shared decision making, and transition.

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Division of Pediatric Endocrinology, Phoenix Children's Hospital, Phoenix, AZ, United States. Electronic address:
Division of Endocrinology, Cincinnati Children's, Cincinnati, OH, United States.
Accord Alliance, Former Executive Director, Patient Adovcate, Gilbert, Arizona.
Division of Pediatric Surgery, Phoenix Children's Hospital, Phoenix, AZ, United States.


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.


Congenital adrenal hyperplasia; Disorder of sex development; Shared decision making; Transition care

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