Masculinising surgery in disorders/differences of sex development: clinician and participant-evaluated appearance and function.

OBJECTIVES To report long-term follow-up outcomes after masculinising surgery in disorders/differences of sex development (DSD), including both physicians and the patient's perspectives on appearance and functional outcome, including sexuality. PATIENTS AND METHODS In total, 1040 adolescents (≥16 years) and adults with a DSD took part in this multicentre cross-sectional clinical study in six European countries in 2014/15. Of those, 150 living in other than the female gender had some kind of masculinising surgery: hypospadias repair, orchidopexy, breast reduction and/or gonadectomy. The study protocol included medical data collection, an optional genital examination, and patient reported outcomes including satisfaction with appearance and current sexual functioning. RESULTS Diagnoses included partial and mixed gonadal dysgenesis (45,XO/46,XY; n=38), Klinefelter syndrome/46,XX males (n=57), and various 46,XY DSDs (n=42; i.e., PAIS, severe hypospadias) and 13 with other diagnoses. Of the participants, 84 underwent hypospadias repair, 86 orchidopexy, 52 gonadectomy and 32 breast reduction (combinations possible). Physicians evaluated anatomical appearance at genital examination as poor in around 11%. After hypospadias surgery, participants reported they were (very) dissatisfied with anatomical appearance in 38%, and with function in 20%. The physician and patient evaluations were moderately correlated (r=.43). CONCLUSION The majority of participants were neutral to satisfied with the appearance and function long-time after masculinising surgery. Due to initial severe phenotype and a risk for unsatisfactory results after masculinising surgery in DSD, the treatment should be handled by experienced multidisciplinary teams in order to optimize the postoperative result.