ESPE Abstracts

Introduction: The aim of the project “DSDCare” is to implement standardized care for people with DSD following national and international guidelines and to evaluate structural, process and outcome quality of care at 10 specialized centres in Germany from May 2020 till June 2023. Transition from paediatric to adult care is a crucial phase in chronic and rare conditions. In DSD, “loss to follow-up” is usually not associated with acute complications. However, monitoring of gonadal function, potential hormone therapy or post-operative treatment and psychosocial, sexuality and fertility counselling are important for physical and mental well-being over the lifespan.

Methods: Within the project, structural quality is evaluated by an annual query of data from the participating centres. Process and outcome quality are evaluated by a national registry (“DSDReg”) and patient surveys. Indicators of structural quality of care include implementation of a structured transition program and/or designated consultation hours at the centres. All participants aged 13-21 are asked to complete a survey evaluating health-related transition competence, comprising the three dimensions “work-related preparedness” (3 items), “condition-related knowledge” (3 items) and “health-care competence” (4 items).

Results: From May 2021 till March 2023 164 adolescents and young adults returned the questionnaire, of which 61 had chromosomal DSD, 51 46,XY-DSD, 50 46,XX-DSD and 2 were not classified. 47 patients were 13-15 years, 42 16-17 years and 75 18-21 years old. 20 incomplete questionnaires were excluded from the analysis. There were no relevant differences of global scores between DSD classifications. The global score was low in the youngest participants and increased moderately with age. Across all age groups scores were highest in the dimension “condition-related knowledge” and lowest in “health-care competence”. At the beginning of the project, no centre had a structured transition program, one offered regular consultation hours for transition. Within the project, a structured transition concept was developed following national guidelines including material as detailed transition readiness assessment questionnaires for patients and care-takers and a structured discharge summary. By the end of 2022, 4 centres had implemented the concept and 2 more had established designated consultation hours, with further centres working on it.

Conclusion: Transition of adolescents and young adults with DSD from paediatric to adult care is still crucial in order to ensure provision of continuous specialized care. To improve outcomes, a structured program has been developed in the project DSDCare and will be implemented and evaluated along with educational programs and interdisciplinary care.