ESPE2022 Poster Category 1 Sex Differentiation, Gonads and Gynaecology, and Sex Endocrinology (56 abstracts)
Empower-DSD: Development of a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents
Sabine Wiegmann 1 , Martina Ernst 1 , Loretta Ihme 1 , Katja Wechsung 1 , Ute Kalender 1 , Barbara Stöckigt 1 , Annette Richter-Unruh 2 , Sander Vögler 2 , Olaf Hiort 3 , Martina Jürgensen 3 , Louise Marshall 3 , Ingo Menrath 3 , Julia Schneidewind 3 , Isabel Wagner 3 , Julia Rohayem 4 , Klaus-Peter Liesenkötter 5 , Martin Wabitsch 6 , Malaika Fuchs 6 , Gloria Herrmann 6 , Henriette Luther 6 , Gundula Ernst 7 , Christine Lehmann 8 , Martina Haase 9 , Stephanie Roll 1 , Ralph Schilling 1 , Thomas Keil 1,9,10 & Uta Neumann 1
1Charité Universitätsmedizin Berlin, Berlin, Germany; 2Klinikum der Ruhr-Universität Bochum, Bochum, Germany; 3University of Lübeck, Lübeck, Germany; 4University Hospital Münster, Münster, Germany; 5Endokrinologikum Berlin, Berlin, Germany; 6Universitätsklinikum Ulm, Ulm, Germany; 7Hannover Medical School, Hannover, Germany; 8Förderkreis Schulung chronisch kranker Kinder und Jugendlicher e.V., Berlin, Germany; 9Würzburg University, Würzburg, Germany; 10State Institute of Health, Bavarian Health and Food Safety Authority, Erlangen, Germany
Background: Differences in sexual development (DSD) are rare diagnoses, which affect the chromosomal, anatomical or gonadal sex differentiation. Although comprehensive counseling of patients and parents/carers is necessary to ensure a positive coping with the diagnosis and a well-informed decision-making, standardised programmes are lacking. Empower-DSD is a government-funded project, which developed an age-adapted multidisciplinary education programme to improve the diagnosis-specific knowledge, skills and empowerment of patients and their parents.
Methods: Within a consortium project of 5 university centers with DSD expertise in Germany, a new patient education programme was developed for children, adolescents and young adults with congenital adrenal hyperplasia (CAH), Turner syndrome, Klinefelter syndrome or XX-/or XY-DSD and their parents. The respective support groups (AGS Eltern- und Patienteninitiative e.V., Turner-Syndrom-Vereinigung Deutschland e.V., 47,xxy klinefelter syndrome e.V., Intergeschlechtliche Menschen e.V., Interfamilien) were involved in the entire developmental process.
Results: A modular structured patient education programme with four generic and three diagnosis-specific modules, based on the previously established ModuS concept for other chronic diseases, was developed. The trainings are conducted as a 2-day training with 4-8 participants in age-homogeneous groups. The first day starts with the welcoming and the participants introduce themselves to each other. The following are diagnosis-specific modules about medical information on diagnosis, treatment and prognosis and about competencies and motivation for basic therapy. A separate module about competencies for the prevention and management of acute crises is only necessary in the CAH-programme. On the second day, the focus is on psychosocial content and includes themes like coping with the diagnosis, empowerment and peer counseling. The 2-day home programmes end with a summary and recapitulation of key contents that participants want to take home. The topics, learning objectives and recommended teaching methods are summarised in structured curricula, one for each diagnosis and age group. At five study centres, 56 trainers were qualified for the implementation of the training programmes. Children, youth and young adults with their parents can attend the Empower-DSD training programmes until August 2022.
Conclusion: Within the project Empower-DSD, modular training programmes for children and young adults aged 8-24 years with the diagnoses CAH, Turner-Syndrome, Klinefelter-Syndrome or XX-/XY-DSD and their parents were developed to improve diagnosis-specific knowledge, skills and empowerment. The effect of the training programmes will be investigated through a quantitative and qualitative evaluation. These results are still pending.
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