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

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.