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Challenges Waiting for an Adult with DSD
Hanna Franziska Nowotny1, Nicole Reisch1
1Medizinische Klinik IV, LMU Klinikum, Munich, Germany.
Managing disorders/differences of sex development (DSD) requires lifelong multidisciplinary care. Transitioning from pediatric to adult care presents challenges, impacting patient health and quality of life.
Area of Science:
- Endocrinology
- Genetics
- Pediatrics
- Urology
- Psychology
Background:
- Disorders/differences of sex development (DSD) are complex inborn conditions with discordant sex development.
- Multidisciplinary care for DSD has evolved since 2005 towards a more holistic approach in specialized centers.
Purpose of the Study:
- To review challenges in transitioning DSD care from pediatric to adult services.
- To discuss health-related issues and management strategies for DSD patients in adulthood.
Main Methods:
- Literature review focusing on DSD care transition and adult health challenges.
- Synthesis of current clinical practice and recommendations for DSD management.
Main Results:
- Transition to adult care is a significant challenge, often leading to loss to follow-up.
- Adult DSD patients face variable long-term outcomes, increased morbidity/mortality, and fertility concerns.
- Psychological support is crucial throughout the lifespan of DSD patients.
Conclusions:
- Effective transition requires coordinated care between pediatric and adult specialists, including urologists, endocrinologists, and psychologists.
- Addressing fertility potential and psychological well-being are key aspects of adult DSD care.
- Continued research and improved care models are needed to optimize long-term outcomes for individuals with DSD.
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