Quality of life among postoperative patients with disorders of sex development: a long-term perspective

Objective: Quality of life (QOL) among patients with disorders of sex development (DSD) is important aspect of their care. In our study, we evaluated the long-term QOL of postoperative DSD patients compared with the control. Design: A cross-sectional study utilizing a standardized questionnaire. Patients and Methods: Thirty-five patients with DSD (seven with congenital adrenal hyperplasia, six with 46, XY gonadal dysgenesis, and twenty-two with androgen insensitivity syndrome) participated in this study. They all underwent different surgical treatments. A long-term follow up was carried out after surgeries including postoperative QOL and sexual life quality, which were assessed through SF-12 questionnaire and Chinese version of Female Sexual Function Index (CVFSFI) for patients with DSD and 35 controls matched for sex, age, and education level etc. Results: The mean follow-up time was 3.98 (0.3-11.2) years. Compared to the 46,XX healthy women, patients with DSD reported significantly lower mental health scores (P<0.05) while other domains were not significantly different (P>0.05). And two patients received psychotherapy after surgery. There were no significant differences (P>0.05) regarding the eight domains between patients with different types of DSD (P>0.05). We observed no differences in QOL between patients with androgen insensitivity syndrome (AIS) who underwent gonadectomy in adolescence or adulthood (P>0.05). Among all patients, only 8women (22.8%) reported sexual activity with lower orgasm and total FSFI scores (P<0.05). Conclusion: A skilled multidisciplinary team is necessary and especially more attention should be paid to the treatment of psychological and sexual problems experienced by patients with DSD to improve their QOL.