Long Term Outcomes in Patients With Differences in Sex Development in Lucknow, India.

Abstract

The long term outcomes for individuals with a difference in sex development (DSD) are influenced by ethnic, socio-cultural and economic factors, besides the medical issues. Data from India on these aspects are sparse. We report on gender identity, patients' opinion regarding timing of genitalia surgery, suicidal thoughts, romantic inclination, and quality of life (QOL, SF36 scale), in 31 young adults with a DSD. Median (IQR) age was 23 (19-27) years; 16 raised male, 15 female. Age at first surgery was 6.0 (2.0-16.25) years. Gender identity in 30 patients remained identical with sex of rearing. Majority (27) thought the timing of genital surgery should be in childhood. Six of 31 patients had attempted suicide at least once. Four patients reported sexual abuse in the past. Twelve patients reported romantic relationships, rates similar to reports from India, with seven reporting sexual intercourse. Eleven of 31 patients reported aversion to and fear of sexual activity, due to fear of rejection. Heterosexual orientation was reported by 25 of 29 patients. QOL scores were not different between patients and 46 healthy controls or 43 people with type 1 diabetes. Mental QOL scores were lower for those with history of teasing (37.10 ± 16.01 vs. 47.76 ± 9.4 in those without, p = 0.04) and with suicidal thoughts (33.9 ± 14.51 vs. 45.65 ± 13.2 for those without, p = 0.04). The absence of prominent gender dysphoria in our young adults was noteworthy, as was their preference for early genital surgery. Lack of adequate mental health support is a high alert for our teams involved in the care of DSD and as well as for policy-makers.