Improving diagnosis-specific knowledge of people with differences of sex development (DSD): Evaluation of the two-day Empower-DSD training course in Germany

OBJECTIVES: Differences of sex development (DSD) include rare diagnoses such as congenital adrenal hyperplasia, Turner syndrome, Klinefelter syndrome and other chromosomal, 46,XX- and 46,XY-DSD. Patient education is an essential aspect of an empowerment approach. This analysis evaluated a new training concept with regard to knowledge acquisition for individuals with DSD and their families to make self-determined decisions about treatment options. METHODS: Two-day diagnosis-specific, and age-homogeneous group training sessions were evaluated in a five-centre, single-arm intervention study in a pre-post design conducted in Germany from 07/2020-09/2022. Participants answered six multiple-choice questions before, three and six months after the training concerning biological-genetic principles, physiological and endocrinological effects, as well as recommendations for therapy and treatment. Points were assigned for correct answers and total scores were then evaluated. A sufficient result was defined as achieving at least 75 % of the total score. Furthermore, a change of 10 % compared to baseline was defined as relevant. RESULTS: A total of 609 subjects were eligible. Participation rates at baseline and 6-month-follow-up were 75 % vs. 39 % (n = 173 children/adolescents), 84 % vs. 46 % (n = 56 young adults), and 89 % vs. 54 % (n = 380 parents). After six months, the proportion of achieving a sufficient test result had increased by 40 %age points in children/adolescents, and by 20 %age points among young adults and parents. Approximately 60 % of children/adolescents and young adults, as well as 44 % of parents, showed relevant improvements in DSD-specific knowledge. CONCLUSIONS: The first and so far only training concept tailored to the specific needs of people with DSD can enhance individuals' ability to make self-determined decisions about treatment options. PRACTICE IMPLICATIONS: In order to improve patient education for individuals with DSD and their families, the presented training concept should be an integral part of the regular medical care as a component of multidisciplinary care in the future.