Jürgensen Martina, Rapp Marion, Schnoor Maike, Heidenreich Andreas, Döhnert Ulla, Scherf Jannick, Hiort Olaf, Katalinic Alexander
Department of Pediatrics and Adolescent Medicine, Section for Pediatric Endocrinology and Diabetology, University Hospital Schleswig-Holstein, Campus Lübeck, Lübeck, Germany.
Institute for Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany.
Horm Res Paediatr. 2024 Jul 29:1-10. doi: 10.1159/000540596.
Achieving evidence-based, high-quality medical care is the overarching goal of healthcare quality management. Quality indicators (QIs) 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).
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. QIs were discussed in a multi-stage systematic consensus process and assessed in terms of their relevance, feasibility, and practicability.
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 QIs (22 structure, seven process, and eight outcome quality). The QIs 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.
We have succeeded in developing and jointly adopting a set of QIs that consider a wide range of perspectives on the quality of care for people with DSD and their families. These QIs have been found to be relevant, feasible, and practicable, and they are now used for a yearly quality benchmarking in the participating DSD centres.
实现基于证据的高质量医疗是医疗质量管理的首要目标。质量指标（QI）作为代理指标，用于表明是否达到了高质量。本文描述了用于评估性发育差异（DSD）领域医疗质量的质量指标的制定过程。
遵循唐纳贝迪安模型，目标是制定质量指标，以评估DSD护理结构、过程和结果质量的特定相关方面。参与DSDCare项目的德国10个DSD临床中心和两个自我倡导团体参与了质量指标和基准系统的制定。质量指标的制定涉及几个结构化步骤：分析指南和建议、文献综述、对DSD领域关键利益相关者以及患者或其护理人员进行定性访谈。质量指标在多阶段系统共识过程中进行了讨论，并根据其相关性、可行性和实用性进行了评估。
在一个多阶段系统共识过程中，我们汇聚了来自多个学科的医学和心理学专家、患有DSD的患者及其家人以及自我倡导团体的代表，制定了一套37个质量指标（22个结构指标、7个过程指标和8个结果指标）。这些质量指标用于评估DSD领域的护理情况，可能会补充德国罕见病国家行动联盟（NAMSE）在这一专业领域制定的罕见病中心认证标准。
我们成功地制定并共同采用了一套质量指标，该指标考虑了对DSD患者及其家庭护理质量的广泛观点。这些质量指标已被证明具有相关性、可行性和实用性，目前正用于参与项目的DSD中心的年度质量基准评估。
