The influence of psychosocial and sexual wellbeing on quality of life in women with differences of sexual development

Ariane Liedmeier; David Jendryczko; Marion Rapp; Robert Roehle; Ute Thyen; Baudewijntje P C Kreukels; dsd-LIFE group

doi:10.1016/j.cpnec.2021.100087

The influence of psychosocial and sexual wellbeing on quality of life in women with differences of sexual development

Compr Psychoneuroendocrinol. 2021 Sep 24:8:100087. doi: 10.1016/j.cpnec.2021.100087. eCollection 2021 Nov.

Authors

Ariane Liedmeier¹, David Jendryczko², Marion Rapp¹, Robert Roehle^{3

4

5}, Ute Thyen¹, Baudewijntje P C Kreukels⁶; dsd-LIFE group

Affiliations

¹ Klinik für Kinder- und Jugendmedizin, Universität zu Lübeck, Lübeck, Germany.
² Department of Psychology, University of Konstanz, Germany.
³ Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Institute of Biometry and Clinical Epidemiology, Charitéplatz 1, 10117 Berlin, Germany.
⁴ Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Clinical Trial Office, Charitéplatz 1, 10117 Berlin, Germany.
⁵ Berlin Institute of Health at Charité - Universitätsmedizin Berlin, Charitéplatz 1, 10117 Berlin, Germany.
⁶ Department of Medical Psychology, Amsterdam University Medical Centers, location VUmc, Amsterdam, the Netherlands.

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.

Keywords: Congenital adrenal hyperplasia; DSD; Psychosocial well-being; Quality of life; Turner syndrome.