ESPE2023 Poster Category 1 Sex Differentiation, Gonads and Gynaecology, and Sex Endocrinology (56 abstracts)
Results of Empower-DSD: a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents
Uta Neumann 1 , Sabine Wiegmann 1 , Martina Ernst 1 , Loretta Ihme 1 , Katja Wechsung 1 , Ute Kalender 1 , Barbara Stöckigt 1 , Annette Richter-Unruh 2 , Cindy Holland 2 , Olaf Hiort 3 , Martina Jürgensen 3 , Louise Marshall 3 , Ulla Döhnert 3 , Julia Schneidewind 3 , Isabel Wagner 3 , Julia Rohayem 4 , Klaus-Peter Liesenkötter 5 , Martin Wabitsch 6 , Malaika Fuchs 6 , Gloria Herrmann 6 , Agnes Bauer 6 , Martina Haase 7 , Anna Grau 7 , Torben Klose 7 , Stephanie Roll 1 , Ralph Schilling 1 & Thomas Keil 1,7,8
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. 7Würzburg University, Würzburg, Germany. 8Bavarian Health and Food Safety Authority, Erlangen, Germany
Background: Within the government-funded project Empower-DSD, modular training programmes for children and young adults aged 6-24 years with the diagnoses CAH, Turner-syndrome, Klinefelter-syndrome or XX-/XY-DSD (including MRKH) and their relatives were developed to improve diagnosis-specific knowledge, skills and empowerment. Overall, 105 trainings were offered between August 2020 and September 2022 in 5 centres with DSD expertise in Germany.
Objectives: To investigate the health-related quality of life (HQoL), satisfaction with the training programme, emotional stress, coping, burden of diagnose and shame, the participants answered questionnaires before the training (t0), immediately after the training (t1), and 3 (t2) and 6 months after the training (t3).
Methods: Used questionnaires were Candril ladder, WHO-5, KINDL, CODI, BIS and questionnaire for patient satisfaction based on ZUF-8 as well as self-constructed questionnaires for diagnose-specific knowledge. The data collected were analysed descriptively on the basis of the ITT population for children (6-13 years), adolescents (14-17 years) as well as young adults (18 years and older) and relatives separately. Categorical variables are presented with absolute and relative frequencies, metric normally distributed variables with arithmetic mean, standard deviation, minimum, maximum or median and interquartile range for non-normally distributed variables. The analysis of satisfaction was differentiated according to the diagnosis of the respondent.
Results: Overall, 634 person were trained in the 2-day modular structured patient education programme: 103 children aged 6-13 years, 94 youth aged 14-17 years, 56 young adults aged 18-24 years and 381 relatives. The questionnaires were completed at t0 by 610 (96%), at t1 by 574 (91%), at t2 by 465 (73%) and at t3 by 379 (60%) participants. The patient satisfaction was high, with the most satisfied participants in the group of Turner-syndrome and lowest in Klinefelter-syndrome. The main outcome parameter HQoL and further analysis on emotional stress, coping, burden of the diagnose, shame of the participants is pending due to the last questioning in March 2023 and will be finalized soon.
Conclusion: The modular training programme of Empower-DSD was developed for children, youth, young adults with a variance of sexual development and their relatives. The overall satisfaction was high with most satisfied participants in the Turner-group and lowest satisfaction in the Klinefelter-group. Trial registration: German Clinical Trials Register, DRKS00023096. Registered 8 October 2020 – Retrospectively registered, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00023096
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