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

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.

PMID: 39104792
PMCID: PMC11299555
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

Sabine Wiegmann et al. PEC Innov. 2024.

. 2024 Jul 8:5:100321.

doi: 10.1016/j.pecinn.2024.100321. eCollection 2024 Dec 15.

Authors

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.

PMID: 39104792
PMCID: PMC11299555
DOI: 10.1016/j.pecinn.2024.100321

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.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Figures

**Fig. 1**
Modules with the topics of the DSD curriculum.

**Fig. 2**
Diversity in course material: Alex* by Vielma©.

See this image and copyright information in PMC

References

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

LinkOut - more resources

Full Text Sources