PD02-11: When and how to disclose genital surgery to girls with CAH? Experiences and preferences of women with CAH

Ashley W. Johnston*, Indianapolis, IN, Mimi S. Kim, Paul Kokorowski, Los Angeles, CA, Devon J. Hensel, Indianapolis, IN, Patrice M. Yasuda, Los Angeles, CA, Konrad M. Szymanski, on behalf of Life with Congenital Adrenal Hyperplasia, Indianapolis, IN

Introduction: To describe experiences and preferences of disclosing childhood genital surgery to females with congenital adrenal hyperplasia (CAH).

Methods: We conducted an anonymous cross-sectional online survey of CAH females (46XX, =16 years [y] old), living in Canada and the United States, who underwent genital surgery before age 4y. Data included experiences and preferences of initial (“first time you were told”) and complete disclosure (“told all details of the surgery”). Non-parametric statistics were used.

Results: Median age of 59 participants was 37y. The 76% of women who received complete disclosure were younger (median age: 33y) and underwent surgery more recently (median decade of surgery: 1980s) than the 14% who received only initial disclosure (median: 47y, 1970s) and 10% without any disclosure (median: 61y, 1960s, p=0.0003).  Median age of initial and complete disclosure was 7-10y and 11-13y years, respectively (Table). Disclosure was preferred by 58 (98%) women, with initial disclosure by age 14y and complete disclosure by 18y. 

Most disclosures were by women’s mothers (initial: 82%, complete: 64%). Doctors were more involved in the complete (47%) vs. initial disclosures (13%, p<0.001), coinciding with women’s preferences to include their mothers (72%) and doctors (43%) in the disclosure process.

Complete disclosure had predominately neutral/mixed and positive effects, rather than negative, on relationships with parents (neutral/mixed: 68%, positive: 18%, negative: 7%, unknown: 7%) and doctors (neutral/mixed: 64%, positive: 21%, negative: 14%, unknown: 2%).

Conclusions: Disclosure of childhood genital surgery to women with CAH has increased over time. Although timing of disclosures varied, women preferred disclosure, initiating it before age 14y and complete disclosure before age 18y. Disclosure may benefit relationships with parents and physicians.

Source of Funding: Departmental research funding