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: Multicenter cross-sectional study in 14 clinics in 6 European countries in 2014-2015.

Participants: Seventy-one individuals with complete androgen insensitivity syndrome (≥16 years old).

Interventions: Data from clinical report files, an optional gynecological examination, patient-reported outcomes on received surgical interventions, satisfaction with appearance and function after surgery, and effect 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 or without vaginal dilations, 9 vaginal dilations only, and 2 breast enlargements. More than half of the participants took part in the gynecological examination. Vaginal length was similar in those without (60 mm) and with (67 mm) 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 effect of gonadectomy on their life.

Conclusion: Despite good genital appearance, functional problems are commonly reported, across the different nonsurgical and surgical regimens. Patient-reported outcomes should be evaluated before and after surgical procedures. Because of the negative effect on life and the low risk of malignancy, gonadectomy should be deferred to adulthood with regular follow-up.

Keywords: Androgen insensitivity syndrome; Disorders of sex development; Patient-reported outcomes; Sexuality; Vaginoplasty.