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BMC Health Services Research

, 17:284

Quality, performance, safety and outcomes


BackgroundThe medical care chain around Down syndrome DS is complex, with many multidisciplinary challenges. The current quality of care is unknown. Outcome-oriented quality indicators have the potential to improve medical practice and evaluate whether innovations are successful. This is particularly interesting for the evolving care for people with DS and intellectual disabilities ID. The aim of this study was to identify existing indicators for medical DS care, by reviewing the literature.

MethodsWe systematically searched six databases PubMed, EMBASE, Web of Science, CINAHL, PsycINFO, Google Scholar for studies concerning the development and implementation of quality indicators for DS and-or ID care, published until February 1 2015. The scoping review method was used, including systematic data extraction and stakeholder consultation.

ResultsWe identified 13 studies concerning quality indicators for ID care that obtained data originating from questionnaires patient-family-staff, medical files and-or national databases. We did not find any indicator sets specifically for DS care. Consulted stakeholders did not come up with additional indicator sets. Existing indicators for ID care predominantly focus on support services. Indicators in care for people with ID targeting medical care are scarce. Of the 70 indicators within the 13 indicator sets, 10% are structure indicators, 34% process, 32% outcome and 24% mixed. Ten of the 13 sets include indicators on the WHO quality dimensions ‘patient-centeredness’, ‘effectiveness’ and ‘efficiency’ of care. ‘Accessibility’ is covered by nine sets, ‘equitability’ by six, and ‘safety’ by four. Most studies developed indicators in a multidisciplinary manner in a joint effort with all relevant stakeholders; some used focus groups to include people with ID.

ConclusionTo our knowledge, this is the first review that searched for studies on quality indicators in DS care. Hence, the study contributes to existing knowledge on DS care as well as on measuring quality of care. Future research should address the development of a compact set of quality indicators for the DS care chain as a whole. Indicators should preferably be patient-centred and outcome-oriented, including user perspectives, while developed in a multidisciplinary way to achieve successful implementation.

KeywordsDown syndrome Intellectual disability Quality of health care Quality indicators Quality measures Integrated delivery of health care AbbreviationsACSCAmbulatory Care Sensitive Conditions

AIREAppraisal of Indicators Through Research and Evaluation

DSDown syndrome

HEDISHealthcare Effectiveness Data and Information Set ®

HEFHealth Equalities Framework

IDIntellectual disabilities

MPOCMeasurement of Processes Of Care

NCINational Core Indicators

NHS-QISNational Health Services – Quality Improvement Scotland

QOFQuality and Outcomes Framework Indicators for learning disabilities

WHOWorld Health Organisation

Electronic supplementary materialThe online version of this article doi:10.1186-s12913-017-2228-x contains supplementary material, which is available to authorized users.

Autor: Francine A. van den Driessen Mareeuw - Mirjam I. Hollegien - Antonia M. W. Coppus - Diana M. J. Delnoij - Esther de Vri


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