Endocrine Abstracts

Background: In 2020, DSD-Care, a collaborative project involving endocrine reference centres, support groups, and research institutes in Germany was launched funded by the German Ministry of Health. The aim of the project was to improve the quality of care for people with differences in sex development (DSD), who often report feeling poorly treated by healthcare providers and a lack of access to detailed information about their condition. Congenital adrenal hyperplasia (CAH) is one of the diagnoses that has been investigated in DSD-Care. According to current studies, patients with CAH often lack knowledge and education about their disease, which can have severe consequences. Proper treatment is crucial, as CAH is a life-threatening disease and patients must respond correctly in emergency situations.

Objective: To produce informative and objective webinars of high-quality for patient education that offer a structured and detailed overview of CAH for affected patients, their families, and those interested in the disease.

Design and methods: Endocrine specialists with extensive experience in CAH worked together to produce literature- and expert-based manuscripts. These manuscripts were transformed into video presentations for the webinars. The recorded videos present information in a clear and logical manner, using formal language that is still accessible to the layperson. Technical terms are introduced when first used, and current gender standards are adhered to.

Results: Experienced endocrinologists created and recorded seven evidence-based webinars for patient education on CAH. The webinars cover five main topics, providing a structured and detailed overview of CAH. The first topic is an introduction to CAH, presented in two videos. The second topic covers treatment and treatment monitoring of CAH, presented in two videos. The third topic presents the (side-)effects of CAH and emergency treatment. Topic four provides information on genetics in CAH and family planning, while topic five introduces CAH in childhood and adolescence. The videos will be freely available after registration on the LMU Klinikum learning platform for patients with CAH, their relatives and other interested viewers.

Conclusions: To serve the needs of people with CAH for better patient education we recorded webinars containing general information on CAH as well as on therapeutic concepts, side effects, sick day rules, genetics, family planning and CAH in childhood and adolescence. The videos are freely available for patients with CAH and all other interested parties. Evaluation of the webinars will be performed by surveys pre- and post-usage.