Versorgungsstrukturen und -konzepte für Menschen mit Varianten der Geschlechtsentwicklung

Background: Long and inefficient diagnostic pathways, the lack of structured and quality assured treatment options and patient information as well as the lack of evidence-based therapeutic strategies hamper a satisfactory medical care for people with differences/disorders of sex development (DSD). Care in specialized centers for rare diseases has been suggested to overcome such deficits. Objective: The aim of this review article is to describe a methodological access to the study of health care services for people with DSD and to report existing knowledge from previous studies. Material and methods: The present review is based on the German network study on DSD, supported by the Federal Ministry of Education and Research (including 439 children, adolescents and adults with DSD who participated in 2005–2007), the EU study dsd-LIFE (including 1040 adolescents older than 16 years and adults with DSD including Turner and Klinefelter syndromes) and a health services research study of the Lübeck specialty clinic with 119 participants. Results: For all studies patient-reported satisfaction with care was chosen as the relevant endpoint. Generally, higher satisfaction was found in the more prevalent conditions for which more evidence-based guidelines and more experience are available. A higher satisfaction was also found for multiprofessional treatment. Adolescents with DSD appear to be a highly vulnerable group who experience an impact on well-being and have difficulties to adapt but are harder to reach with psychosocial support. Conclusion: Apart from the necessary access to highly specialized care, there is a high demand for psychosocial care and unmet needs in this aspect of care. All clinics should pay special attention to the needs of adolescents so that adaptive disorders and problematic transition processes into adulthood are avoided.