SUN-056 Long Term Outcomes in Patients with Disorders of Sex Development in Lucknow, North India

Abstract

Due to the deviant genitalia and infertility, the ill effects of DSD are on sexual and psychosocial life. Our aim was to assess the self-reported psychosocial and sexual quality of life in older individuals who are living with a DSD. Quality of life in 31 patients with a DSD (age >16 years, median [IQR] 23 [19-27] years, 16 males) was compared with age, sex and socioeconomic status matched normal (n = 46) and chronic disease controls (type 1 diabetes patients, n = 43) using SF-36v2 Health Survey. Another structured questionnaire was administered touching upon domains of sexual and psychosocial life. Eighteen patients reported history of persistent teasing, with no difference in prevalence between males and females. Eighteen reported suicidal thoughts (no association with being teased), 6 having attempted suicide. Gender identity (GI) of 30 patients was identical with their given sex of rearing, which had been decided by the caregiver in 19 families (including one who had gender change suggested by the parents at 4 years of age), and with physician assistance in 11. One patient had spontaneous change of GI at 16 years age. Sexual orientation was heterosexual in 25 of 29 who responded to this question, homosexual in 1 and bisexual in 3, including the 2 who had gender change. Romantic relationship was reported by 12 patients, sexual activity by 7, aversion to sex (due to fear of rejection) by 11 and abuse by 4. Seventeen patients thought the timing of genital surgery should be before age 5 years and another 10 before age 10 years. Only 2 of 31 patients thought decision for the timing and choice of surgery should rest with themselves, the remainder preferring a decision by parents in 25% and by the physician in 67%. The physical and mental quality of life scores (QOLS) were not different between patients and the controls. Mental QOLS were significantly lower for those with history of teasing. Physical QOLS in males correlated with external masculinisation score (r=0.55, p=0.04). Conclusion: Serious psychological stress is common in patients with DSD in our region. Despite early sex assignment, the absence of prominent gender dysphoria in adulthood, along with their stated preference for corrective genital surgery at an early age, favour an early sex assignment and genital reconstruction before the age of romantic relationships.