Abstract
BACKGROUND: Previous research indicating that women with differences of sexual development (DSD), namely women with Turner syndrome (TS), women with congenital adrenal hyperplasia (CAH), and women with XY-DSD, have an impaired psychosocial and sexual well-being and quality of life (QOL), was often limited by small samples and inadequate control groups (CGs). Only few studies analysed which psychosocial and sexual factors influence QOL in women with DSD and no study so far has examined whether the DSD-condition itself and the diagnostic group to which they belong moderate this influence. METHODS: We compared 301 women with TS, 221 women with CAH and 142 women with XY-DSD with 603 non-DSD women regarding depression, anxiety, self-esteem, attention deficit hyperactivity disorder, autism, social participation, body acceptance, relationship status, sexual satisfaction and QOL. Furthermore, we investigated the influence of psychosocial and sexual well-being on QOL within and between diagnostic groups and examined whether the DSD-condition moderates the influence of psychosocial and sexual well-being on QOL. RESULTS: Women with DSD reported average psychosocial well-being and QOL; only women with CAH reported an impaired physical QOL. However, women with DSD were less satisfied with their body and had less often a partner than women in the CG. Women with CAH and XY-DSD were less satisfied with their sex life compared to women in the CG. Across groups, better health and lower depression scores predicted better QOL, whereas higher self-esteem especially predicted better QOL in women with DSD. The presence of DSD moderated the influence of psychosocial and sexual well-being on QOL, however, the specific diagnosis group mainly moderated the influence on physical QOL. CONCLUSION: We have learned that body and sexual satisfaction need further attention in women with DSD. To optimize their QOL, psychosocial well-being should be taken in account. The improvement of self-esteem seems particularly relevant for women with DSD, as this helps coping with having a variant of sexual development.