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

Abstract

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. 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. 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. 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. 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.