Satisfaction with health care among people with differences of sex development (DSD) in Germany.

Abstract

Objective People with a difference of sex development (DSD) have to deal with complex medical and psychosocial challenges making it difficult to provide treatment adapted to their needs and in line with guidelines. Within the project DSDCare in Germany quality of care of people with DSD is evaluated regularly focusing on patient satisfaction as an indicator of good quality. Design Nationwide, longitudinal multicentre observational study in Germany including people with DSD. Methods Ten specialised DSD centres recruit since May 2021 people with DSD and collect patient-related medical data in a registry. Participants and in case of minors the legal guardians receive a questionnaire including questions about satisfaction with care using the Y/CHC-SUN questionnaire. Medical and self-reported data were merged and analysed descriptively. Results Of the 141 adults and 232 parents completing a questionnaire between May 2021 and December 2023, 81.9% of adults and 86.4% of parents stated to be "very" or "extremely satisfied" with their health care. Scores in the dimensions "doctor's behaviour" and "patient-centred care" were very high for both adults and parents while the dimensions "clinical environment," "diagnosis/information," and "coordination" were rated slightly lower. Some participants missed DSD training, psychological counselling, contact to self-advocacy groups and, in the case of adults, nutritional counselling. Conclusion People with DSD treated at specialised DSD centres in Germany are very satisfied with their care. The next step is to ensure that all people with DSD have access to a specialised centre to receive care that meets their needs.