Satisfaction with a new patient education program for children, adolescents, and young adults with differences of sex development (DSD) and their parents

Sabine Wiegmann; Ralph Schilling; Mirja Winter; Martina Ernst; Katja Wechsung; Ute Kalender; Barbara Stöckigt; Annette Richter-Unruh; Olaf Hiort; Ulla Döhnert; Louise Marshall; Julia Rohayem; Klaus-Peter Liesenkötter; Martin Wabitsch; Gloria Herrmann; Gundula Ernst; Stephanie Roll; Thomas Keil; Uta Neumann

doi:10.1016/j.pecinn.2024.100321

Satisfaction with a new patient education program for children, adolescents, and young adults with differences of sex development (DSD) and their parents

PEC Innov. 2024 Jul 8:5:100321. doi: 10.1016/j.pecinn.2024.100321. eCollection 2024 Dec 15.

Authors

Sabine Wiegmann^{1

2}, Ralph Schilling², Mirja Winter¹, Martina Ernst¹, Katja Wechsung¹, Ute Kalender², Barbara Stöckigt², Annette Richter-Unruh³, Olaf Hiort⁴, Ulla Döhnert⁴, Louise Marshall⁴, Julia Rohayem^{5

6}, Klaus-Peter Liesenkötter⁷, Martin Wabitsch⁸, Gloria Herrmann⁸, Gundula Ernst⁹, Stephanie Roll², Thomas Keil^{2

10

11}, Uta Neumann¹

Affiliations

¹ Center for Chronically Sick Children, Department for paediatric endocrinology and diabetology, Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin Institute of Health, Berlin, Germany.
² Institute of Social Medicine, Epidemiology and Health Economics, Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin Institute of Health, Berlin, Germany.
³ St. Josefs Hospital, Pediatric Endocrinology & Diabetology, Ruhr-University Bochum, Bochum, Germany.
⁴ Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany.
⁵ Centre for Reproductive Medicine and Andrology, Clinical and Operative Andrology, University Hospital Münster, Münster, Germany.
⁶ Pediatric Endocrinology, Ostschweizer Kinderspital, St. Gallen, Switzerland.
⁷ Center for Hormonal and Metabolic Disorders, Endokrinologikum Berlin, Berlin, Germany.
⁸ Hormone center for children and adolescents, Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, Ulm University Medical Center, Ulm, Germany.
⁹ Hannover Medical School, Department of Medical Psychology, Hannover, Germany.
¹⁰ Institute of Clinical Epidemiology and Biometry, Würzburg University, Würzburg, Germany.
¹¹ State Institute of Health I, Bavarian Health and Food Safety Authority, Erlangen, Germany.

Abstract

Objective: Evaluation of the participant satisfaction with a newly developed interdisciplinary, modular education program for children, adolescents, and young adults with differences of sex development (DSD) and their parents.

Methods: The two-day program including tailored medical information, peer consultation and psychological support aimed to improve diagnosis-specific knowledge and empowerment. Post-training satisfaction was measured using an adapted ZUF-8 questionnaire, scoring from 5 (worst) to a maximum of 26 (best) for persons aged 6-17 and from 10 to 40 points for adults, including 2 open-ended questions.

Results: The questionnaire, completed by 89 children (6-13 years), 92 adolescents (14-17 years), 47 young adults (18-24 years), and 345 parents, revealed consistent high satisfaction with the program regardless of age or diagnosis (children 24.4 ± 2.1, adolescents 23.5 ± 2.7; young adults 36.0 ± 4.0, parents 36.6 ± 3.4). Neither sociodemographic factors nor diagnosis burden, shame, or informedness showed relevant associations with satisfaction levels. Participants highlighted exchange and open atmosphere as key satisfaction elements.

Conclusion: Satisfaction with the new education program was high in all examined groups. Implementing it in routine care requires further analysis to determine the program's long-term effects on well-being and knowledge.

Innovation: The first educational program for young people with DSD addressing their specific challenges through inclusive language, an open approach to sex and gender and the inclusion of self-help groups.

Keywords: Congenital adrenal hyperplasia; DSD; Differences of sex development; Klinefelter syndrome; ModuS; Patient education; Satisfaction; Turner syndrome.