Quality of life evaluation in juveniles with disorders of sexual development

Abstract

Purpose: To evaluate the quality of life of 6-11-year-old children and 12-17-year-old adolescents with disorders of sexual development (DSDs) following reparative surgery.

Methods: Fifty pediatric patients with DSDs, including 32 cases of congenital adrenal hyperplasia, 2 cases of complete androgen insensitivity syndrome, 1 case of partial androgen insensitivity syndrome, 6 cases of complete testicular dysgenesis, 7 cases of partial testicular dysgenesis, and 2 cases of ovotesticular DSD, with complete follow-up data, were recruited. Healthy control subjects (matched for age, gender, and living environment) served as controls. Physical, socio-emotional, and psychological evaluations were performed.

Result: Among 50 patients, eight boys and two girls (designated by social gender) were unsatisfied with the morphology of their external genitalia. Social limitations were observed in 4/8 (50 %) of the boys and in 12/42 (28.6 %) of the girls. Psychological problems were significantly more prevalent in the DSD group than in the control group (p < 0.05).

Conclusions: The quality of life of pediatric patients with DSDs was impaired to varying degrees following reparative surgery.