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Utilization of a shared decision-making tool in a female infant with congenital adrenal hyperplasia and genital

Reeti Chawla1, Erica M Weidler2, Janett Hernandez2

  • 1Attending Physician, Division of Pediatric Endocrinology, Phoenix Children's Hospital, Clinical Assistant Professor - Child Health, UA College of Medicine - Phoenix, 1920 East Cambridge Ave, Suite 301, Phoenix, AZ 85016, USA.

Journal of Pediatric Endocrinology & Metabolism : JPEM
|May 31, 2019
PubMed

Insights

Shared decision-making (SDM) empowers parents of infants with congenital adrenal hyperplasia (CAH) to make informed choices about genital surgery. This approach facilitated a decision to defer surgery for a child with CAH and genital atypia.

Area of Science:

  • Pediatric endocrinology
  • Genetics and heredity
  • Medical ethics

Background:

  • Shared decision-making (SDM) is a collaborative healthcare approach.
  • Multidisciplinary teams developed an SDM tool for disorders of sex development (DSD), specifically for congenital adrenal hyperplasia (CAH).

Observation:

  • A 2.5-year-old female with CAH and genital atypia was evaluated.
  • The patient's parents initially planned for elective genital surgery.

Findings:

  • Utilizing the developed SDM tool enabled the parents to make an informed decision.
  • The family opted to defer urogenital sinus surgery for their daughter.

Implications:

  • SDM tools can facilitate informed decision-making for controversial interventions like elective genital surgery in CAH.
  • Future research will explore the broader applicability of SDM in managing CAH in children.

Keywords:
congenital adrenal hyperplasiagenital ambiguityshared decision-making

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