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

Abstract

Objective: Individuals with a difference of sex development (DSD) face complex medical and psychosocial challenges, which can make it difficult to provide care tailored to their needs and in line with guidelines. The DSDCare project in Germany regularly evaluates the quality of care for people with DSD, focusing on patient satisfaction as a key indicator of care quality.

Design: Nationwide, longitudinal, multicentre observational study in Germany, including people with DSD.

Methods: Since May 2021, ten specialised DSD centres have been recruiting individuals with DSD and collecting patient-related medical data in a registry. Participants and legal guardians, in the case of minors, complete a questionnaire about satisfaction with care using the Y/CHC-SUN questionnaire. Both medical and self-reported data were merged and analysed descriptively.

Results: Between May 2021 and December 2023, 141 adults and 232 parents completed the questionnaire. Of these, 81.9% of adults and 86.4% of parents reported being 'very' or 'extremely satisfied' with their healthcare. Satisfaction 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 expressed unmet needs for DSD training, psychological counselling, contact with self-advocacy groups and, in the case of adults, nutritional counselling.

Conclusion: Individuals with DSD treated at specialised DSD centres in Germany report high satisfaction with their care. The next step is to ensure that all individuals with DSD have access to a specialised centre to where their care needs can be met.

Significance statement: Several international guidelines provide recommendations for the management of individuals with DSD. Previous studies examining the evolution of management practices in response to these guidelines have concluded that while some are being implemented, others are not, with notable regional variations. In addition, there is limited understanding of satisfaction with care from the perspective of adults and, in particular, from parents of children with DSD, which is a key indicator of quality of care. Consequently, our study focused on patient-related outcomes and experiences, as well as on identifying unmet needs to enhance the quality of care for individuals with DSD in Germany.