Development of quality indicators to evaluate the quality of care for people with Differences of Sex Development (DSD)

DSDCare Study Group

doi:10.1159/000540596

Development of quality indicators to evaluate the quality of care for people with Differences of Sex Development (DSD)

DSDCare Study Group

Abstract

Introduction Achieving evidence-based, high quality medical care is the overarching goal of healthcare quality management. Quality indicators (QI) serve as proxies to show whether good quality is reached or not. This article describes the development of QI for the evaluation of healthcare quality in the area of Differences of Sex Development (DSD). Methods Following the model of Donabedian, the aim was to develop QI to assess defined relevant aspects of the quality of structures, processes, and outcomes of care in DSD. Ten DSD clinical centres and two self-advocacy groups in Germany included in the DSDCare project were involved in the development of the QI and a benchmarking system. The development of the QI involved several structured steps: Analysis of guidelines and recommendations, literature review, qualitative interviews with key stakeholders in the field of DSD and patients or their carers. QI were discussed in a multi-stage systematic consensus process and assessed in terms of their relevance, feasibility, and practicability. Results In a multi-stage systematic consensus process involving medical and psychological experts from a range of disciplines, people with DSD and their families, and representatives of self-advocacy groups we have developed a set of 37 QI (22 structure, seven process, and eight outcome quality). The QI serve to evaluate care in the field of DSD and may add to the German criteria for certification of Centres for Rare Conditions formulated by the National Action League for People with Rare Diseases (NAMSE) in this area of expertise. Conclusion We have succeeded in developing and jointly adopting a set of quality indicators that consider a wide range of perspectives on the quality of care for people with DSD and their families. These QI have been found to be relevant, feasible and practicable and they are now used for a yearly quality benchmarking in the participating DSD centres.

Original language	English
Journal	Hormone Research in Paediatrics
ISSN	1663-2818
DOIs	https://doi.org/10.1159/000540596
Publication status	E-pub ahead of print - 29.07.2024

Research Areas and Centers

Research Area: Center for Population Medicine and Public Health (ZBV)
Academic Focus: Center for Brain, Behavior and Metabolism (CBBM)

DFG Research Classification Scheme

205-02 Public Health, Health Services Research and Social Medicine
205-20 Pediatric and Adolescent Medicine

UN SDGs

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

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10.1159/000540596

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

Cite this

@article{5e480eaaba9b4edeb270a8e55bc11d43,

title = "Development of quality indicators to evaluate the quality of care for people with Differences of Sex Development (DSD)",

abstract = "Introduction Achieving evidence-based, high quality medical care is the overarching goal of healthcare quality management. Quality indicators (QI) serve as proxies to show whether good quality is reached or not. This article describes the development of QI for the evaluation of healthcare quality in the area of Differences of Sex Development (DSD). Methods Following the model of Donabedian, the aim was to develop QI to assess defined relevant aspects of the quality of structures, processes, and outcomes of care in DSD. Ten DSD clinical centres and two self-advocacy groups in Germany included in the DSDCare project were involved in the development of the QI and a benchmarking system. The development of the QI involved several structured steps: Analysis of guidelines and recommendations, literature review, qualitative interviews with key stakeholders in the field of DSD and patients or their carers. QI were discussed in a multi-stage systematic consensus process and assessed in terms of their relevance, feasibility, and practicability. Results In a multi-stage systematic consensus process involving medical and psychological experts from a range of disciplines, people with DSD and their families, and representatives of self-advocacy groups we have developed a set of 37 QI (22 structure, seven process, and eight outcome quality). The QI serve to evaluate care in the field of DSD and may add to the German criteria for certification of Centres for Rare Conditions formulated by the National Action League for People with Rare Diseases (NAMSE) in this area of expertise. Conclusion We have succeeded in developing and jointly adopting a set of quality indicators that consider a wide range of perspectives on the quality of care for people with DSD and their families. These QI have been found to be relevant, feasible and practicable and they are now used for a yearly quality benchmarking in the participating DSD centres.",

author = "Martina J{\"u}rgensen and {DSDCare Study Group} and Marion Rapp and Maike Schnoor and Andreas Heidenreich and Ulla D{\"o}hnert and Jannick Scherf and Olaf Hiort and Alexander Katalinic",

note = "The Author(s). Published by S. Karger AG, Basel.",

year = "2024",

month = jul,

day = "29",

doi = "10.1159/000540596",

language = "English",

journal = "Hormone Research in Paediatrics",

issn = "1663-2818",

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T1 - Development of quality indicators to evaluate the quality of care for people with Differences of Sex Development (DSD)

AU - Jürgensen, Martina

AU - DSDCare Study Group

AU - Rapp, Marion

AU - Schnoor, Maike

AU - Heidenreich, Andreas

AU - Döhnert, Ulla

AU - Scherf, Jannick

AU - Hiort, Olaf

AU - Katalinic, Alexander

N1 - The Author(s). Published by S. Karger AG, Basel.

PY - 2024/7/29

Y1 - 2024/7/29

N2 - Introduction Achieving evidence-based, high quality medical care is the overarching goal of healthcare quality management. Quality indicators (QI) serve as proxies to show whether good quality is reached or not. This article describes the development of QI for the evaluation of healthcare quality in the area of Differences of Sex Development (DSD). Methods Following the model of Donabedian, the aim was to develop QI to assess defined relevant aspects of the quality of structures, processes, and outcomes of care in DSD. Ten DSD clinical centres and two self-advocacy groups in Germany included in the DSDCare project were involved in the development of the QI and a benchmarking system. The development of the QI involved several structured steps: Analysis of guidelines and recommendations, literature review, qualitative interviews with key stakeholders in the field of DSD and patients or their carers. QI were discussed in a multi-stage systematic consensus process and assessed in terms of their relevance, feasibility, and practicability. Results In a multi-stage systematic consensus process involving medical and psychological experts from a range of disciplines, people with DSD and their families, and representatives of self-advocacy groups we have developed a set of 37 QI (22 structure, seven process, and eight outcome quality). The QI serve to evaluate care in the field of DSD and may add to the German criteria for certification of Centres for Rare Conditions formulated by the National Action League for People with Rare Diseases (NAMSE) in this area of expertise. Conclusion We have succeeded in developing and jointly adopting a set of quality indicators that consider a wide range of perspectives on the quality of care for people with DSD and their families. These QI have been found to be relevant, feasible and practicable and they are now used for a yearly quality benchmarking in the participating DSD centres.

AB - Introduction Achieving evidence-based, high quality medical care is the overarching goal of healthcare quality management. Quality indicators (QI) serve as proxies to show whether good quality is reached or not. This article describes the development of QI for the evaluation of healthcare quality in the area of Differences of Sex Development (DSD). Methods Following the model of Donabedian, the aim was to develop QI to assess defined relevant aspects of the quality of structures, processes, and outcomes of care in DSD. Ten DSD clinical centres and two self-advocacy groups in Germany included in the DSDCare project were involved in the development of the QI and a benchmarking system. The development of the QI involved several structured steps: Analysis of guidelines and recommendations, literature review, qualitative interviews with key stakeholders in the field of DSD and patients or their carers. QI were discussed in a multi-stage systematic consensus process and assessed in terms of their relevance, feasibility, and practicability. Results In a multi-stage systematic consensus process involving medical and psychological experts from a range of disciplines, people with DSD and their families, and representatives of self-advocacy groups we have developed a set of 37 QI (22 structure, seven process, and eight outcome quality). The QI serve to evaluate care in the field of DSD and may add to the German criteria for certification of Centres for Rare Conditions formulated by the National Action League for People with Rare Diseases (NAMSE) in this area of expertise. Conclusion We have succeeded in developing and jointly adopting a set of quality indicators that consider a wide range of perspectives on the quality of care for people with DSD and their families. These QI have been found to be relevant, feasible and practicable and they are now used for a yearly quality benchmarking in the participating DSD centres.

U2 - 10.1159/000540596

DO - 10.1159/000540596

M3 - Journal articles

C2 - 39074461

SN - 1663-2818

JO - Hormone Research in Paediatrics

JF - Hormone Research in Paediatrics

ER -

Development of quality indicators to evaluate the quality of care for people with Differences of Sex Development (DSD)

Abstract

Research Areas and Centers

DFG Research Classification Scheme

UN SDGs

Access to Document

Projects

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

Cite this