Quality of care for people with differences of sex development (DSD) in Germany

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

doi:10.1186/s13023-024-03467-5

Quality of care for people with differences of sex development (DSD) in Germany

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

Abstract

People with "Differences of Sex Development" (DSD) require comprehensive, specialised, and individualised medical and psychological care. This is often perceived as inadequate by those affected. Therefore, the German Federal Ministry of Health funded the project DSDCare which aimed to improve the quality of care for people with DSD over the lifespan in Germany.

Originalsprache	Englisch
Aufsatznummer	460
Zeitschrift	Orphanet Journal of Rare Diseases
Jahrgang	19
Ausgabenummer	1
Seiten (von - bis)	460
ISSN	1750-1172
DOIs	https://doi.org/10.1186/s13023-024-03467-5
Publikationsstatus	Veröffentlicht - 12.2024

Fördermittel

Open Access funding enabled and organized by Projekt DEAL. The complete project DSDCare was funded by the Federal Ministry of Health (Grant no. 2519FSB503).

Träger	Trägernummer
Bundesministerium für Gesundheit	2519FSB503

UN SDGs

Dieser Output leistet einen Beitrag zu folgendem(n) Ziel(en) für nachhaltige Entwicklung

SDG 3 – Gesundheit und Wohlergehen
SDG 5 – Gender Equality
SDG 10 – Weniger Ungleichheiten

Strategische Forschungsbereiche und Zentren

Profilbereich: Zentrum für Bevölkerungsmedizin und Versorgungsforschung (ZBV)

DFG-Fachsystematik

2.22-17 Endokrinologie, Diabetologie, Metabolismus
2.22-20 Kinder- und Jugendmedizin
2.22-02 Public Health, gesundheitsbezogene Versorgungsforschung, Sozial- und Arbeitsmedizin
1.22-03 Entwicklungspsychologie und Pädagogische Psychologie
1.22-05 Persönlichkeitspsychologie, Klinische und Medizinische Psychologie, Methoden

Dokumente

10.1186/s13023-024-03467-5

Weitere Links

1 Abgeschlossen
1 Laufend

SFB 1665: Sexdiversity - Determinanten, Bedeutungen und Implikationen der Geschlechtervielfalt in soziokulturellen, medizinischen und biologischen Kontexten
Hiort, O. (Sprecher*in), Rehmann-Sutter, C. (Stellv. Sprecher*in, Co-Sprecher*in), Aherrahrou, R. (Projektleiter*in (PI)), Busch, H. S. (Projektleiter*in (PI)), Frielitz-Wagner, I. V. (Projektleiter*in (PI)), Göpel, W. (Projektleiter*in (PI)), Holterhus, P. M. (Projektleiter*in (PI)), Hornig, N. C. (Projektleiter*in (PI)), Hundt, J. (Projektleiter*in (PI)), Jürgensen, M. (Projektleiter*in (PI)), Kircher, M. (Projektleiter*in (PI)), König, I. R. (Projektleiter*in (PI)), Krämer, U. (Projektleiter*in (PI)), Kulle, A. E. (Projektleiter*in (PI)), Laudes, M. (Projektleiter*in (PI)), Mangold, A. K. (Projektleiter*in (PI)), Malich, L. (Projektleiter*in (PI)), Mittag, J. (Projektleiter*in (PI)), Müller, F. J. (Projektleiter*in (PI)), Nemec, B. (Projektleiter*in (PI)), Palm, K. (Projektleiter*in (PI)), Reisch, N. (Projektleiter*in (PI)), Seeger, K. (Projektleiter*in (PI)), Spielmann, M. (Projektleiter*in (PI)), Stammberger, B. (Projektleiter*in (PI)), Stoff, H. (Projektleiter*in (PI)), Hines, M. (Scientific Advisor), Huebner, A. (Scientific Advisor), Wunn, C. (Scientific Advisor), Roggemann, E. (Scientific Advisor), Herrn, R. (Scientific Advisor), Sinclair, A. (Scientific Advisor), Villa Braslavsky, P.-I. (Scientific Advisor), Balachandran, S. (Postdoctoral Fellow), Mazukatow, A. (Postdoctoral Fellow), Scholz, J. (Postdoctoral Fellow), Steinbach, X. (Postdoctoral Fellow), Taege, N. (Postdoctoral Fellow), Wagemann, S. (Postdoctoral Fellow), Alnawasreh, B. (Doktorand*in), Ambrozini, L. (Doktorand*in), Blöbaum, L. (Doktorand*in), Chandra Prakash, S. A. (Doktorand*in), Dahl, A. (Doktorand*in), Denker, S. (Doktorand*in), Döhr, K. (Doktorand*in) & Egli, L. (Doktorand*in)
01.02.24 → …
Projekt: DFG Verbundprojekte › DFG Sonderforschungsbereiche / Transregios (SFB/TR)

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@article{7031ef68a50d4541975ece7ff2e5b92b,

title = "Quality of care for people with differences of sex development (DSD) in Germany",

abstract = "Background: People with {"}Differences of Sex Development{"} (DSD) require comprehensive, specialised, and individualised medical and psychological care. This is often perceived as inadequate by those affected. Therefore, the German Federal Ministry of Health funded the project DSDCare which aimed to improve the quality of care for people with DSD over the lifespan in Germany. Method: Indicators of structural, process, and outcome quality were defined, which are used to evaluate the quality of care. The indicators of structural quality are collected once a year from ten participating centres. Based on the {"}Open Source Registry System for Rare Diseases (OSSE){"}, a DSD-specific registry (DSDReg) was developed, in which patient-related care data are recorded in order to be able to assess the process and outcome quality. Furthermore, patient-reported outcomes are collected directly from the patients by means of questionnaires. The data are reported back to the participating centres in an annual benchmarking. Results: Twenty-five indicators of structural quality were defined, twelve indicators of process quality and ten of outcome quality. A total of 477 patients were registered in DSDReg in the period from May 2021 till October 2022. The mean age is 16 years; the most common diagnosis groups are 46,XY DSD (34.8\%), followed by 46,XX DSD (33.3\%) and chromosomal DSD (27.5\%). Patient numbers vary across centres from N = 10 to N = 131. Questionnaires are available from 316 (66.2\%) affected individuals, including 122 from adults, 120 from children or adolescents with DSD, and 191 from parents. Preliminary results show heterogeneity between centres in both data quality and quality of care. Conclusions: The DSDReg is well established in the DSDCare project as a quality assurance tool with continuously increasing recruitment figures. The implemented quality indicators are applicable, enable a comparison between the participating centres and will foreseeably lead to an improvement of the care of patients with DSD. A long-term continuation of the registry after the end of the initial study period is therefore indicated.",

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

note = "Publisher Copyright: {\textcopyright} The Author(s) 2024.",

year = "2024",

month = dec,

doi = "10.1186/s13023-024-03467-5",

language = "English",

volume = "19",

pages = "460",

journal = "Orphanet Journal of Rare Diseases",

issn = "1750-1172",

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T1 - Quality of care for 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 - 2024/12

Y1 - 2024/12

N2 - Background: People with "Differences of Sex Development" (DSD) require comprehensive, specialised, and individualised medical and psychological care. This is often perceived as inadequate by those affected. Therefore, the German Federal Ministry of Health funded the project DSDCare which aimed to improve the quality of care for people with DSD over the lifespan in Germany. Method: Indicators of structural, process, and outcome quality were defined, which are used to evaluate the quality of care. The indicators of structural quality are collected once a year from ten participating centres. Based on the "Open Source Registry System for Rare Diseases (OSSE)", a DSD-specific registry (DSDReg) was developed, in which patient-related care data are recorded in order to be able to assess the process and outcome quality. Furthermore, patient-reported outcomes are collected directly from the patients by means of questionnaires. The data are reported back to the participating centres in an annual benchmarking. Results: Twenty-five indicators of structural quality were defined, twelve indicators of process quality and ten of outcome quality. A total of 477 patients were registered in DSDReg in the period from May 2021 till October 2022. The mean age is 16 years; the most common diagnosis groups are 46,XY DSD (34.8%), followed by 46,XX DSD (33.3%) and chromosomal DSD (27.5%). Patient numbers vary across centres from N = 10 to N = 131. Questionnaires are available from 316 (66.2%) affected individuals, including 122 from adults, 120 from children or adolescents with DSD, and 191 from parents. Preliminary results show heterogeneity between centres in both data quality and quality of care. Conclusions: The DSDReg is well established in the DSDCare project as a quality assurance tool with continuously increasing recruitment figures. The implemented quality indicators are applicable, enable a comparison between the participating centres and will foreseeably lead to an improvement of the care of patients with DSD. A long-term continuation of the registry after the end of the initial study period is therefore indicated.

AB - Background: People with "Differences of Sex Development" (DSD) require comprehensive, specialised, and individualised medical and psychological care. This is often perceived as inadequate by those affected. Therefore, the German Federal Ministry of Health funded the project DSDCare which aimed to improve the quality of care for people with DSD over the lifespan in Germany. Method: Indicators of structural, process, and outcome quality were defined, which are used to evaluate the quality of care. The indicators of structural quality are collected once a year from ten participating centres. Based on the "Open Source Registry System for Rare Diseases (OSSE)", a DSD-specific registry (DSDReg) was developed, in which patient-related care data are recorded in order to be able to assess the process and outcome quality. Furthermore, patient-reported outcomes are collected directly from the patients by means of questionnaires. The data are reported back to the participating centres in an annual benchmarking. Results: Twenty-five indicators of structural quality were defined, twelve indicators of process quality and ten of outcome quality. A total of 477 patients were registered in DSDReg in the period from May 2021 till October 2022. The mean age is 16 years; the most common diagnosis groups are 46,XY DSD (34.8%), followed by 46,XX DSD (33.3%) and chromosomal DSD (27.5%). Patient numbers vary across centres from N = 10 to N = 131. Questionnaires are available from 316 (66.2%) affected individuals, including 122 from adults, 120 from children or adolescents with DSD, and 191 from parents. Preliminary results show heterogeneity between centres in both data quality and quality of care. Conclusions: The DSDReg is well established in the DSDCare project as a quality assurance tool with continuously increasing recruitment figures. The implemented quality indicators are applicable, enable a comparison between the participating centres and will foreseeably lead to an improvement of the care of patients with DSD. A long-term continuation of the registry after the end of the initial study period is therefore indicated.

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U2 - 10.1186/s13023-024-03467-5

DO - 10.1186/s13023-024-03467-5

M3 - Journal articles

C2 - 39654033

SN - 1750-1172

VL - 19

SP - 460

JO - Orphanet Journal of Rare Diseases

JF - Orphanet Journal of Rare Diseases

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ER -

Quality of care for people with differences of sex development (DSD) in Germany

Abstract

Fördermittel

UN SDGs

Strategische Forschungsbereiche und Zentren

DFG-Fachsystematik

Dokumente

Weitere Links

Fingerprint

Projekte

SFB 1665: Sexdiversity - Determinanten, Bedeutungen und Implikationen der Geschlechtervielfalt in soziokulturellen, medizinischen und biologischen Kontexten

Zitieren