The Investigation of Quality of Life in 87 Chinese Patients with Disorders of Sex Development

Abstract

Objective. In the process of care for disorders of sex development (DSD), clinical decisions should focus on the long-term quality of life (QOL). We sought to investigate the QOL of patients with DSD in China. Design. Case-control study was carried out. Patients. 90 patients of DSD participated in the study. Finally, 87 patients were analyzed including Turner's syndrome (23), Noonan syndrome (2), androgen insensitivity syndrome (22), testicular regression syndrome (2), congenital adrenal hyperplasia (16), and pure gonadal dysgenesis (22). Measurements. The WHOQOL-BREF questionnaire was chosen for the present investigation. Four domain scores were analyzed independently including physical, psychological, and social relationship and environmental domains. Results. The average age of the DSD group is 22.34 ± 4.97 years, and only 13.79% patients ever had sexual life. The scores of psychological and environmental domains were lower than that of the physical and social relationship domains, but the difference was not significant (P > 0.05). Compared with the Chinese urban population, the QOL scores of DSD patients in China were not significantly lower. Conclusions. With proper treatment, including the follow-up and psychological support, the QOL of DSD patients cannot be significantly reduced. For DSD patients, more attention should be paid to the potential psychological and sexual problems.

Health‐related quality of life and psychological well‐being in adults with differences/disorders of sex development

“…When compared to previous studies also using the SF‐36 in adults with CAH, the f‐CAH‐pa group in this study showed a better HRQoL (Table a) …”

“…This might be due to the inhomogeneous group distribution, larger variation and non‐normal distribution of the data. Using a different questionnaire (WHOQOL‐BREF, WHOQOL), other studies described the same effect . Likewise, previous analysis of the German DSD network study of adolescents with DSD reared as girls showed higher HRQoL scores than girls of the reference group regarding physical well‐being.…”

“…A wide spectrum in QoL is expressed by individuals with DSD ranging from very poor to similar or better than the norm population . Better QoL ratings were found for individuals with DSD from tertiary care centres . Even in studies using the same method, the findings varied .…”

“…Reviews on QoL and psychological outcomes for adults with DSD cited nine original articles from 1995 to 2004 and fifteen from 2005 to 2014 . In 2015, five novel studies were published . Although these studies address QoL and/or psychological well‐being of individuals with DSD, the results varied greatly.…”

Gonadal tumour risk in 292 phenotypic female patients with disorders of sex development containing Y chromosome or Y‐derived sequence

“…Patients could achieve future fertility by implantation of embryos fertilized with donated oocyte; for patients without uterus (AIS, testis regression and 17 OHD), oestradiol monotherapy in doses of 2 mg daily is appropriate and fertility would not be considered. Psychological consulting would improve the quality of DSD life …”