Satisfaction with health care among people with differences of sex development (DSD) in Germany
Objective: Individuals with a difference of sex development (DSD) face complex medical and psychosocial challenges, which can make it difficult to provide care tailored to their needs and in line with guidelines. The DSDCare project in Germany regularly evaluates the quality of care for people with...
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| Format: | Article |
| Language: | English |
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Bioscientifica
2025-02-01
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| Series: | Endocrine Connections |
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| Online Access: | https://ec.bioscientifica.com/view/journals/ec/14/3/EC-24-0647.xml |
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| author | Maike Schnoor Andreas Heidenreich Martina Jürgensen Ulla Döhnert Olaf Hiort Alexander Katalinic the DSDCare study group |
| author_facet | Maike Schnoor Andreas Heidenreich Martina Jürgensen Ulla Döhnert Olaf Hiort Alexander Katalinic the DSDCare study group |
| author_sort | Maike Schnoor |
| collection | DOAJ |
| description | Objective: Individuals with a difference of sex development (DSD) face complex medical and psychosocial challenges, which can make it difficult to provide care tailored to their needs and in line with guidelines. The DSDCare project in Germany regularly evaluates the quality of care for people with DSD, focusing on patient satisfaction as a key indicator of care quality. Design: Nationwide, longitudinal, multicentre observational study in Germany, including people with DSD. Methods: Since May 2021, ten specialised DSD centres have been recruiting individuals with DSD and collecting patient-related medical data in a registry. Participants and legal guardians, in the case of minors, complete a questionnaire about satisfaction with care using the Y/CHC-SUN questionnaire. Both medical and self-reported data were merged and analysed descriptively. Results: Between May 2021 and December 2023, 141 adults and 232 parents completed the questionnaire. Of these, 81.9% of adults and 86.4% of parents reported being ‘very’ or ‘extremely satisfied’ with their healthcare. Satisfaction 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 expressed unmet needs for DSD training, psychological counselling, contact with self-advocacy groups and, in the case of adults, nutritional counselling. Conclusion: Individuals with DSD treated at specialised DSD centres in Germany report high satisfaction with their care. The next step is to ensure that all individuals with DSD have access to a specialised centre to where their care needs can be met. |
| format | Article |
| id | doaj-art-e096c472fb7c474db28ffd221e8de281 |
| institution | OA Journals |
| issn | 2049-3614 |
| language | English |
| publishDate | 2025-02-01 |
| publisher | Bioscientifica |
| record_format | Article |
| series | Endocrine Connections |
| spelling | doaj-art-e096c472fb7c474db28ffd221e8de2812025-08-20T01:47:28ZengBioscientificaEndocrine Connections2049-36142025-02-0114310.1530/EC-24-06471Satisfaction with health care among people with differences of sex development (DSD) in GermanyMaike Schnoor0Andreas Heidenreich1Martina Jürgensen2Ulla Döhnert3Olaf Hiort4Alexander Katalinic5the DSDCare study groupInstitute of Social Medicine and Epidemiology, University of Luebeck, Luebeck, GermanyInstitute of Social Medicine and Epidemiology, University of Luebeck, Luebeck, GermanyDivision of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University Hospital of Schleswig-Holstein and University of Luebeck, Luebeck, GermanyDivision of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University Hospital of Schleswig-Holstein and University of Luebeck, Luebeck, GermanyDivision of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University Hospital of Schleswig-Holstein and University of Luebeck, Luebeck, GermanyInstitute of Social Medicine and Epidemiology, University of Luebeck, Luebeck, GermanyObjective: Individuals with a difference of sex development (DSD) face complex medical and psychosocial challenges, which can make it difficult to provide care tailored to their needs and in line with guidelines. The DSDCare project in Germany regularly evaluates the quality of care for people with DSD, focusing on patient satisfaction as a key indicator of care quality. Design: Nationwide, longitudinal, multicentre observational study in Germany, including people with DSD. Methods: Since May 2021, ten specialised DSD centres have been recruiting individuals with DSD and collecting patient-related medical data in a registry. Participants and legal guardians, in the case of minors, complete a questionnaire about satisfaction with care using the Y/CHC-SUN questionnaire. Both medical and self-reported data were merged and analysed descriptively. Results: Between May 2021 and December 2023, 141 adults and 232 parents completed the questionnaire. Of these, 81.9% of adults and 86.4% of parents reported being ‘very’ or ‘extremely satisfied’ with their healthcare. Satisfaction 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 expressed unmet needs for DSD training, psychological counselling, contact with self-advocacy groups and, in the case of adults, nutritional counselling. Conclusion: Individuals with DSD treated at specialised DSD centres in Germany report high satisfaction with their care. The next step is to ensure that all individuals with DSD have access to a specialised centre to where their care needs can be met.https://ec.bioscientifica.com/view/journals/ec/14/3/EC-24-0647.xmldsddifferences of sex developmentpatient satisfactionquality of carepatient reported outcome |
| spellingShingle | Maike Schnoor Andreas Heidenreich Martina Jürgensen Ulla Döhnert Olaf Hiort Alexander Katalinic the DSDCare study group Satisfaction with health care among people with differences of sex development (DSD) in Germany Endocrine Connections dsd differences of sex development patient satisfaction quality of care patient reported outcome |
| title | Satisfaction with health care among people with differences of sex development (DSD) in Germany |
| title_full | Satisfaction with health care among people with differences of sex development (DSD) in Germany |
| title_fullStr | Satisfaction with health care among people with differences of sex development (DSD) in Germany |
| title_full_unstemmed | Satisfaction with health care among people with differences of sex development (DSD) in Germany |
| title_short | Satisfaction with health care among people with differences of sex development (DSD) in Germany |
| title_sort | satisfaction with health care among people with differences of sex development dsd in germany |
| topic | dsd differences of sex development patient satisfaction quality of care patient reported outcome |
| url | https://ec.bioscientifica.com/view/journals/ec/14/3/EC-24-0647.xml |
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