Endocrine Abstracts

Background: DSDs are congenital conditions that require adaptation and coping in every stage of life. Coping is facilitated through communication, disclosure and acceptance. To communicate a DSD diagnosis within the family and one’s wider social network can be challenging given the lack of knowledge among lay people, and the (perceived) social taboo that may surround these conditions. Now that feminizing and masculinizing surgery in infancy are less commonly performed, there is an increased need for patients and parents to be open about their/their child’s condition. As this can be challenging, many patients and parents need additional support. In order to communicate a DSD diagnosis well, patients and parents must be well informed and be comfortable to discuss DSD and related delicate topics. We developed the DSD Infographics Toolbox to facilitate communication on the DSD diagnosis and personal needs.

Method: Development of infographics in a format that is suitable for cell-phone, tablet or laptop. The infographics consist of illustrations and easy-to-read compact text messages in plain language that aim to reach a large and diverse group of users – parents and children of 8 years onwards from different social, cultural and ethnic backgrounds.

Results: The DSD Infographic Toolbox contains 14 digital infographics and provides information on the most prevalent diagnoses. Children and adolescents can use the infographics to enhance their own understanding of the condition, and to inform their (intimate) friends and social network (e.g. sports coaches). Parents can use the toolbox to inform their children, close relatives and friends, and their social network. The provided information is essential but compact to enable parents and children to adapt information and make it suitable to apply in their own community.

Conclusions: The DSD Infographic Toolbox will be presented at the 12th I-DSD symposium. The toolbox is available in Dutch, French and English. The DSD Infographic Toolbox is granted by Ghent University Special Research Fund BOF/MVF/202309/014 and the Stichting Sophia Kinderziekenhuis Fonds (SKZF) WEL26-02