Context: Higher frequency of atypical gender identity, non-heterosexual fantasies and sexual relationships, and cross-gender role behavior has been reported in females with the more severe salt wasting form of congenital adrenal hyperplasia (CAH). Data on these aspects and quality of life (QOL) among the milder, more prevalent form, the non-classic CAH (NCCAH) is scarce.
Objective: To assess gender identity, gender role, sexual orientation and health-related quality of life (HRQoL) in women with NCCAH.
Design and Participants: Thirty-eight NCCAH females median age 34 years (range, 18-44) and 62 age-matched healthy female controls participated in this questionnaire-based study. Outcome measures included: The Multi-Gender Scale Identity Questionnaire (multi-GIQ), a Sexuality Questionnaire, the Personal Attributes Questionnaire and the World Health Organization Quality of Life (WHOQOL) questionnaire.
Results: Sociodemographic parameters including marital status, number of children, educational level and income were similar for patients and controls. The two groups were similar on most measures of the Multi-GIQ and those of the sexuality questionnaire. However, "sometimes-feeling-as-a-man"-and-"sometimes-feeling-as-a-woman" were more frequently reported in the NCCAH group compared to the controls [7/38 (18.4%) vs 3/62 (4.8%) respectively, P=0.02], and a higher percentage of NCCAH women reported first falling in love with a woman (11.1% vs 0%, P=0.02). There was no difference between the groups on any QOL measures.
Conclusions: Our findings suggest subtle differences in gender identity and sexual orientation between adult NCCAH females and controls. Quality of life was not impaired in subjects with NCCAH compared to controls. The impact of exposure to mildly elevated androgen levels during childhood and adolescence on the female brain warrants more in-depth assessment in further studies.
19 - 21 Sep 2019
European Society for Paediatric Endocrinology