Strategies for improving the knowledge of patients and carers

Treating people with a difference of sex development requires a multidisciplinary team. In recent years, knowledge of diagnoses and approaches to support and treatment have both evolved. To enable people with DSD to make informed decisions about medical treatments related to their diagnosis, they and their legal guardians must be provided with comprehensive information. This knowledge transfer is based on a multimodal strategy incorporating individual counselling from endocrinologists and psychologists, group training to enhance understanding and coping strategies, peer counselling with case studies, and the use of digital, visual, and written educational materials. Decision-making aids provide clarity in complex medical decisions and facilitate long-term understanding of the decisions made. Sustainable education requires continuous training for professionals, covering topics such as the legal framework in individual countries, cultural aspects that may influence families' decisions, and language skills. Future research should evaluate the long-term impact of structured knowledge transfer programmes.