Satisfaction with health care among people with differences of sex development (DSD) in Germany

Maike Schnoor; Andreas Heidenreich; Martina Jürgensen; Ulla Döhnert; Olaf Hiort; Alexander Katalinic

doi:10.1530/EC-24-0647

Satisfaction with health care among people with differences of sex development (DSD) in Germany

Maike Schnoor, Andreas Heidenreich, Martina Jürgensen, Ulla Döhnert, Olaf Hiort, Alexander Katalinic

Abstract

Objective People with a difference of sex development (DSD) have to deal with complex medical and psychosocial challenges making it difficult to provide treatment adapted to their needs and in line with guidelines. Within the project DSDCare in Germany quality of care of people with DSD is evaluated regularly focusing on patient satisfaction as an indicator of good quality. Design Nationwide, longitudinal multicentre observational study in Germany including people with DSD. Methods Ten specialised DSD centres recruit since May 2021 people with DSD and collect patient-related medical data in a registry. Participants and in case of minors the legal guardians receive a questionnaire including questions about satisfaction with care using the Y/CHC-SUN questionnaire. Medical and self-reported data were merged and analysed descriptively. Results Of the 141 adults and 232 parents completing a questionnaire between May 2021 and December 2023, 81.9% of adults and 86.4% of parents stated to be "very" or "extremely satisfied" with their health care. Scores in the dimensions "doctor's behaviour" and "patient-centred care" were very high for both adults and parents while the dimensions "clinical environment," "diagnosis/information," and "coordination" were rated slightly lower. Some participants missed DSD training, psychological counselling, contact to self-advocacy groups and, in the case of adults, nutritional counselling. Conclusion People with DSD treated at specialised DSD centres in Germany are very satisfied with their care. The next step is to ensure that all people with DSD have access to a specialised centre to receive care that meets their needs.

Original language	English
Journal	Endocrine Connections
Volume	14
Issue number	3
ISSN	2049-3614
DOIs	https://doi.org/10.1530/EC-24-0647
Publication status	Published - 01.03.2025

Research Areas and Centers

Research Area: Center for Population Medicine and Public Health (ZBV)

DFG Research Classification Scheme

2.22-17 Endocrinology, Diabetology, Metabolism
2.22-02 Public Health, Healthcare Research, Social and Occupational Medicine

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1530/EC-24-0647

SFB 1665: Sexdiversity - Determinants, meanings and implications of sex diversity in sociocultural, medical and biological landscapes
Hiort, O. (Speaker, Coordinator), Spielmann, M. (Principal Investigator (PI)), Holterhus, P. M. (Principal Investigator (PI)), Hornig, N. C. (Principal Investigator (PI)), Müller, F. J. (Principal Investigator (PI)), Frielitz-Wagner, I. (Principal Investigator (PI)), Mittag, J. (Principal Investigator (PI)), Kircher, M. (Principal Investigator (PI)), Seeger, K. (Principal Investigator (PI)), Kulle, A. E. (Principal Investigator (PI)), Busch, H. S. (Principal Investigator (PI)), Aherrahrou, R. (Principal Investigator (PI)), Krämer, U. (Principal Investigator (PI)), Reisch, N. (Principal Investigator (PI)), Göpel, W. (Principal Investigator (PI)), König, I. R. (Principal Investigator (PI)), Laudes, M. (Principal Investigator (PI)), Jürgensen, M. (Principal Investigator (PI)), Mangold, A. K. (Principal Investigator (PI)), Rehmann-Sutter, C. (Second Speaker/Coordinator), Stammberger, B. (Principal Investigator (PI)), Stoff, H. (Principal Investigator (PI)), Palm, K. (Principal Investigator (PI)), Malich, L. (Principal Investigator (PI)), Nemec, B. (Principal Investigator (PI)), Hundt, J. (Principal Investigator (PI)) & Kohlrausch, J. (Principal Investigator (PI))
01.02.24 → …
Project: DFG Projects › DFG Joint Research: Collaborative Research Center/ Transregios

Cite this

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title = "Satisfaction with health care among people with differences of sex development (DSD) in Germany",

abstract = "Objective People with a difference of sex development (DSD) have to deal with complex medical and psychosocial challenges making it difficult to provide treatment adapted to their needs and in line with guidelines. Within the project DSDCare in Germany quality of care of people with DSD is evaluated regularly focusing on patient satisfaction as an indicator of good quality. Design Nationwide, longitudinal multicentre observational study in Germany including people with DSD. Methods Ten specialised DSD centres recruit since May 2021 people with DSD and collect patient-related medical data in a registry. Participants and in case of minors the legal guardians receive a questionnaire including questions about satisfaction with care using the Y/CHC-SUN questionnaire. Medical and self-reported data were merged and analysed descriptively. Results Of the 141 adults and 232 parents completing a questionnaire between May 2021 and December 2023, 81.9% of adults and 86.4% of parents stated to be {"}very{"} or {"}extremely satisfied{"} with their health care. Scores in the dimensions {"}doctor's behaviour{"} and {"}patient-centred care{"} were very high for both adults and parents while the dimensions {"}clinical environment,{"} {"}diagnosis/information,{"} and {"}coordination{"} were rated slightly lower. Some participants missed DSD training, psychological counselling, contact to self-advocacy groups and, in the case of adults, nutritional counselling. Conclusion People with DSD treated at specialised DSD centres in Germany are very satisfied with their care. The next step is to ensure that all people with DSD have access to a specialised centre to receive care that meets their needs.",

author = "Maike Schnoor and Andreas Heidenreich and Martina J{\"u}rgensen and Ulla D{\"o}hnert and Olaf Hiort and Alexander Katalinic",

year = "2025",

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doi = "10.1530/EC-24-0647",

language = "English",

volume = "14",

journal = "Endocrine Connections",

issn = "2049-3614",

publisher = "Bioscientifica Ltd",

number = "3",

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T1 - Satisfaction with health care among people with differences of sex development (DSD) in Germany

AU - Schnoor, Maike

AU - Heidenreich, Andreas

AU - Jürgensen, Martina

AU - Döhnert, Ulla

AU - Hiort, Olaf

AU - Katalinic, Alexander

PY - 2025/3/1

Y1 - 2025/3/1

N2 - Objective People with a difference of sex development (DSD) have to deal with complex medical and psychosocial challenges making it difficult to provide treatment adapted to their needs and in line with guidelines. Within the project DSDCare in Germany quality of care of people with DSD is evaluated regularly focusing on patient satisfaction as an indicator of good quality. Design Nationwide, longitudinal multicentre observational study in Germany including people with DSD. Methods Ten specialised DSD centres recruit since May 2021 people with DSD and collect patient-related medical data in a registry. Participants and in case of minors the legal guardians receive a questionnaire including questions about satisfaction with care using the Y/CHC-SUN questionnaire. Medical and self-reported data were merged and analysed descriptively. Results Of the 141 adults and 232 parents completing a questionnaire between May 2021 and December 2023, 81.9% of adults and 86.4% of parents stated to be "very" or "extremely satisfied" with their health care. Scores in the dimensions "doctor's behaviour" and "patient-centred care" were very high for both adults and parents while the dimensions "clinical environment," "diagnosis/information," and "coordination" were rated slightly lower. Some participants missed DSD training, psychological counselling, contact to self-advocacy groups and, in the case of adults, nutritional counselling. Conclusion People with DSD treated at specialised DSD centres in Germany are very satisfied with their care. The next step is to ensure that all people with DSD have access to a specialised centre to receive care that meets their needs.

AB - Objective People with a difference of sex development (DSD) have to deal with complex medical and psychosocial challenges making it difficult to provide treatment adapted to their needs and in line with guidelines. Within the project DSDCare in Germany quality of care of people with DSD is evaluated regularly focusing on patient satisfaction as an indicator of good quality. Design Nationwide, longitudinal multicentre observational study in Germany including people with DSD. Methods Ten specialised DSD centres recruit since May 2021 people with DSD and collect patient-related medical data in a registry. Participants and in case of minors the legal guardians receive a questionnaire including questions about satisfaction with care using the Y/CHC-SUN questionnaire. Medical and self-reported data were merged and analysed descriptively. Results Of the 141 adults and 232 parents completing a questionnaire between May 2021 and December 2023, 81.9% of adults and 86.4% of parents stated to be "very" or "extremely satisfied" with their health care. Scores in the dimensions "doctor's behaviour" and "patient-centred care" were very high for both adults and parents while the dimensions "clinical environment," "diagnosis/information," and "coordination" were rated slightly lower. Some participants missed DSD training, psychological counselling, contact to self-advocacy groups and, in the case of adults, nutritional counselling. Conclusion People with DSD treated at specialised DSD centres in Germany are very satisfied with their care. The next step is to ensure that all people with DSD have access to a specialised centre to receive care that meets their needs.

U2 - 10.1530/EC-24-0647

DO - 10.1530/EC-24-0647

M3 - Journal articles

C2 - 39913256

SN - 2049-3614

VL - 14

JO - Endocrine Connections

JF - Endocrine Connections

IS - 3

ER -

Satisfaction with health care among people with differences of sex development (DSD) in Germany

Abstract

Research Areas and Centers

DFG Research Classification Scheme

UN SDGs

Access to Document

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Projects

SFB 1665: Sexdiversity - Determinants, meanings and implications of sex diversity in sociocultural, medical and biological landscapes

Cite this