Participant- and clinician-reported long-term outcomes after surgery in individuals with complete androgen insensitivity syndrome.

Abstract Study objective To evaluate the outcomes of genital surgery through participant’s and observer’s satisfaction with the anatomical and functional result. Design and Setting: Multicentre cross-sectional study in 14 clinics in six European countries in 2014/15. Participants Seventy-one individuals with complete androgen insensitivity syndrome (≥16 years old). Interventions Data from clinical report files, an optional gynaecological examination, patient-reported outcomes on received surgical interventions, satisfaction with appearance and function after surgery, and impact of the surgical procedure on life. Main Outcome Measures Outcomes were calculated per different surgical treatments. Linear regression models were used for associations with vaginal satisfaction. Results Sixty-three participants had received surgery: 62 gonadectomies, 12 vaginal surgeries with(out) vaginal dilations, nine vaginal dilations only and two breast enlargements. More than half of the participants took part in the gynaecological examination. Vaginal length was similar in those without (60mm) and with (67mm) vaginoplasty and/or vaginal dilations. Participant- and observer-reported appearance of the genitals were generally satisfactory to good. Sexual complaints (pain or bleeding during/after intercourse) were common. Vaginal satisfaction was strongly associated with satisfaction with sex life in general, whereas vaginal interventions and number of surgeries were not. Many participants reported a negative impact of gonadectomy on their life. Conclusions Despite good genital appearance, functional problems are commonly reported, across the different (non-)surgical regimens. Patient-reported outcomes should be evaluated both before and after surgical procedures. Due to the negative impact on life and the low risk of malignancy, gonadectomy should be deferred to adulthood with regular follow-up.