Development of Quality Indicators to Evaluate the Quality of Care for People with Differences of Sex Development

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.