The Role of Patient Advocacy and the Declining Rate of Clitoroplasty in 46,XX Patients With Congenital Adrenal Hyperplasia

Morgan B. Schoer, Phillip Nam Nguyen, Diane F. Merritt, Victoria G. Wesevich, Abby S. Hollander

Research output: Contribution to journalArticlepeer-review

9 Scopus citations

Abstract

Prior to the 1990s, most 46,XX infants with clitoromegaly secondary to congenital adrenal hyperplasia were treated with feminizing genitoplasty to make their cosmetic appearance congruent with their genotypic sex. A 2006 consensus statement for the management of intersex disorders accepted input from patient advocates and did not support purely cosmetic surgery for clitoromegaly. This study examined the extent to which the desired change was implemented in practice. Retrospective chart review was performed at a single Midwestern tertiary care medical center for patients born between 1979 and 2013. Of 45 virilized patients, 40 had clitoromegaly and 39 had urogenital sinus or posterior labial fusion. Twenty-seven (67.5%) patients underwent clitoroplasty and 33 (84.6%) underwent perineoplasty, including vaginoplasty, urethroplasty, imperforate vagina repair, and/or posterior labial fusion repair. There was a linear decline in the rate of clitoroplasty over time for the patient cohort. This study demonstrates the power of patient advocacy to improve medical practice.

Original languageEnglish
Pages (from-to)1664-1671
Number of pages8
JournalClinical Pediatrics
Volume57
Issue number14
DOIs
StatePublished - Dec 1 2018

Keywords

  • CAH
  • advocacy
  • clitoromegaly
  • clitoroplasty
  • congenital adrenal hyperplasia
  • infants

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