Quality of life evaluation in juveniles with disorders of sexual development

Abstract

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