ESPE Abstracts

Background: International guidelines recommend specialised medical and psychosocial care for people with DSD by multidisciplinary teams in designated centres. The DSDCare project, funded by the German Federal Ministry of Health from 05/2020-08/2023, aimed to implement a standardised care model for people with DSD, and evaluate quality of care in 10 centres in Germany.

Methods: Initially, quality indicators for structural, process and outcome quality were developed to evaluate DSD care. Structural quality of care was assessed through annual surveys in the participating centres, starting in 2019 before the start of the project. Indicators were scored as ‘met’/’not met’ and summed up to a final score. Process and outcome quality were assessed from a newly developed patient registry and standardised patient questionnaires on satisfaction with treatment, quality of life (QOL), acceptance of one’s own body, and transition competence. The percentage of people who received certain services or were extremely/ very satisfied with care and the deviation from the median were presented for all centres. Results of QOL questionnaires were scored and compared with the standard population. All results were summarised in annual benchmarking reports for all participating centres.

Results: From 05/2021-12/2023, 628 children, adolescents and adults with DSD were enrolled in the registry. Questionnaires were returned by 63% of the participants or their guardians. From 2019 to 2023 an improvement in structural quality was observed in all centres. Psychological, fertility and peer counselling were routinely offered while the implementation of a structured transition programme developed by the project was not achieved by all centres and some standards (e.g. gonadal monitoring) are still under development. Satisfaction with DSD treatment was generally high. Specific items such as satisfaction with how the team dealt with feelings at the time of diagnosis or information about medication showed lower scores. With the exception of physical health, scores of QOL questionnaires were similar to those of the general population. There were no significant changes in satisfaction with treatment or QOL during the study period.

Conclusion: The implementation of a standardised care model following guideline recommendations leads to an improvement in structural and process quality in the participating DSD centres. Effects on patient satisfaction with care and QOL cannot be demonstrated over a period of two years. However, the results allow the identification of specific aspects of care that can be improved in the centres. The benchmarking exercise will be continued in a new national reference network.