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

PEC Innovation (Dec 2024)

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

Affiliations

Sabine Wiegmann: 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; 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; Corresponding author at: Charité – Universitätsmedizin Berlin, Institute of Social Medicine, Epidemiology and Health Economics, Charitéplatz 1, 10117 Berlin, Germany.
Ralph Schilling: 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
Mirja Winter: 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
Martina Ernst: 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
Katja Wechsung: 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
Ute Kalender: 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
Barbara Stöckigt: 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
Annette Richter-Unruh: St. Josefs Hospital, Pediatric Endocrinology & Diabetology, Ruhr-University Bochum, Bochum, Germany
Olaf Hiort: Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany
Ulla Döhnert: Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany
Louise Marshall: Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany
Julia Rohayem: Centre for Reproductive Medicine and Andrology, Clinical and Operative Andrology, University Hospital Münster, Münster, Germany; Pediatric Endocrinology, Ostschweizer Kinderspital, St. Gallen, Switzerland
Klaus-Peter Liesenkötter: Center for Hormonal and Metabolic Disorders, Endokrinologikum Berlin, Berlin, Germany
Martin Wabitsch: Hormone center for children and adolescents, Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, Ulm University Medical Center, Ulm, Germany
Gloria Herrmann: Hormone center for children and adolescents, Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, Ulm University Medical Center, Ulm, Germany
Gundula Ernst: Hannover Medical School, Department of Medical Psychology, Hannover, Germany
Stephanie Roll: 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
Thomas Keil: 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; Institute of Clinical Epidemiology and Biometry, Würzburg University, Würzburg, Germany; State Institute of Health I, Bavarian Health and Food Safety Authority, Erlangen, Germany
Uta Neumann: 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

Journal volume & issue: Vol. 5
p. 100321

Abstract

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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.

Published in PEC Innovation

ISSN: 2772-6282 (Online)
Publisher: Elsevier
Country of publisher: Netherlands
LCC subjects: Medicine: Public aspects of medicine
Website: https://www.sciencedirect.com/journal/pec-innovation

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