The Role of Patient Advocacy and the Declining Rate of Clitoroplasty in 46,XX Patients With Congenital Adrenal Hyperplasia.
Level 4 - case-series / case-control
Retrospective case series / chart review without a concurrent control group
PubMed 30261740 · doi:10.1177/0009922818803407
What was done
Retrospective chart review of 46,XX patients with congenital adrenal hyperplasia born between 1979 and 2013 at a single Midwestern tertiary care medical center to examine temporal trends in feminizing surgical procedures following consensus guideline changes.
What was found
Among 45 virilized patients, 40 had clitoromegaly and 39 had urogenital sinus or posterior labial fusion. Overall, 27 of 40 (67.5%) underwent clitoroplasty and 33 of 39 (84.6%) underwent perineoplasty. The abstract reports a linear decline in the rate of clitoroplasty over time, though specific numeric rates per time period or statistical test values were not provided.
Why it matters
This study documents an institutional shift away from routine cosmetic clitoroplasty in children with congenital adrenal hyperplasia following patient advocacy and updated consensus guidelines.
Limits
Single-center retrospective design with a small sample size (n = 45). The abstract lacks specific statistical metrics, era-stratified rates, confidence intervals, and clinical or psychological follow-up outcomes.