In search of quality indicators for Down syndrome healthcare: a scoping review

Abstract

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 1st 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-017-2228-x) contains supplementary material, which is available to authorized users.

Capturing the complexity of healthcare for people with Down syndrome in quality indicators - a Delphi study involving healthcare professionals and patient organisations

“…We used a Delphi technique involving healthcare professionals and patient organisations' representatives. The ndings of this study, together with ndings from two previous studies of the authors (a literature review on existing QIs and a qualitative study involving people with DS and their caregivers [10,21]), will be used to inform the further development and implementation of the QI-set.…”

“…This is supported by the Convention on the Rights of Persons with Disabilities, advocating high-quality healthcare for people with disabilities, and acknowledging the right for obtaining the highest possible level of health [8]. However, little is known about the quality of DS-specialised healthcare [9,10]. Quality in healthcare is multidimensional.…”

Health monitoring of young children with Down syndrome: A parent‐report study

“…Children with Down syndrome can have complex health needs; however, the quality and consistency of health service provision are unclear, including the extent to which health professionals adhere to health monitoring guidelines (van den Driessen Mareeuw et al, ). This study aimed to gather parent reports on health service provision and monitoring for children with Down syndrome aged 0–5 years in the UK.…”

“…It is important to benchmark current practice and identify potential issues so that clinical practice can be improved for people with Down syndrome (Henderson et al, ). Adherence to health monitoring guidelines could act as a quality indicator of health care for individuals with Down syndrome, leading to insights about the standard of health care and clinical outcomes thereby informing evidence‐based change to clinical practice (van den Driessen Mareeuw et al, ).…”

“…In addition, there has been little research focussing on health monitoring in early childhood when it is critical that health problems are identified and addressed in order to ensure the best start to life and facilitate long‐term health. Currently, research in this area is extremely limited and in need of further development (van den Driessen Mareeuw, Hollegien, Coppus, Delnoij, & de Vries, ; Henderson, Lynch, Wilkinson, & Hunter, ).…”