Official websites use. Share sensitive information only on official, secure websites. Disorders of sex development DSD are a heterogeneous group of rare genetic disorders of sex determination or differentiation. Evidence-based guidelines concerning gender assignment and surgical and hormonal treatment are limited for many DSD entities, and health care is highly fragmented across various sub-specialties and settings.
A lack of informed consent, secrecy about the condition, shame, and impaired sexual and psychosocial functioning may affect satisfaction with care. The main goal of this study was to describe satisfaction with care in individuals with DSD and to identify factors associated with low satisfaction with care.
We used standardized measures to assess satisfaction with care CSQ-8 , health-related quality of life SF , psychological symptoms BSI , and gender identity FGI , in addition to self-constructed questionnaires probing experiences with health care and access to self-help groups.
A total of adults were recruited between January and December in four study centers in Germany, Austria, and German-speaking Switzerland. Reports of half the participants scored below the cut-off indicating low quality of care.
Satisfaction with care was positively associated with indicators of psychological well-being. Satisfaction with care is lowest among participants with the rarest conditions, highlighting the lack of evidence-based recommendations and the lack of coordination of care. Associations of satisfaction and well-being indicate the need to ensure access to mental health services. They encompass a heterogeneous group of congenital conditions affecting sex determination or differentiation with diverse genetic etiology and varying levels of prenatal androgen effects and different genitalia phenotypes.
