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

BACKGROUND: The 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 particu...

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Autores principales: van den Driessen Mareeuw, Francine A., Hollegien, Mirjam I., Coppus, Antonia M. W., Delnoij, Diana M. J., de Vries, Esther
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5395825/
https://www.ncbi.nlm.nih.gov/pubmed/28420357
http://dx.doi.org/10.1186/s12913-017-2228-x
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author van den Driessen Mareeuw, Francine A.
Hollegien, Mirjam I.
Coppus, Antonia M. W.
Delnoij, Diana M. J.
de Vries, Esther
author_facet van den Driessen Mareeuw, Francine A.
Hollegien, Mirjam I.
Coppus, Antonia M. W.
Delnoij, Diana M. J.
de Vries, Esther
author_sort van den Driessen Mareeuw, Francine A.
collection PubMed
description BACKGROUND: The 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. METHODS: We 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(st) 2015. The scoping review method was used, including systematic data extraction and stakeholder consultation. RESULTS: We 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. CONCLUSION: To 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 MATERIAL: The online version of this article (doi:10.1186/s12913-017-2228-x) contains supplementary material, which is available to authorized users.
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spelling pubmed-53958252017-04-20 In search of quality indicators for Down syndrome healthcare: a scoping review van den Driessen Mareeuw, Francine A. Hollegien, Mirjam I. Coppus, Antonia M. W. Delnoij, Diana M. J. de Vries, Esther BMC Health Serv Res Research Article BACKGROUND: The 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. METHODS: We 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(st) 2015. The scoping review method was used, including systematic data extraction and stakeholder consultation. RESULTS: We 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. CONCLUSION: To 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 MATERIAL: The online version of this article (doi:10.1186/s12913-017-2228-x) contains supplementary material, which is available to authorized users. BioMed Central 2017-04-18 /pmc/articles/PMC5395825/ /pubmed/28420357 http://dx.doi.org/10.1186/s12913-017-2228-x Text en © The Author(s). 2017 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
van den Driessen Mareeuw, Francine A.
Hollegien, Mirjam I.
Coppus, Antonia M. W.
Delnoij, Diana M. J.
de Vries, Esther
In search of quality indicators for Down syndrome healthcare: a scoping review
title In search of quality indicators for Down syndrome healthcare: a scoping review
title_full In search of quality indicators for Down syndrome healthcare: a scoping review
title_fullStr In search of quality indicators for Down syndrome healthcare: a scoping review
title_full_unstemmed In search of quality indicators for Down syndrome healthcare: a scoping review
title_short In search of quality indicators for Down syndrome healthcare: a scoping review
title_sort in search of quality indicators for down syndrome healthcare: a scoping review
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5395825/
https://www.ncbi.nlm.nih.gov/pubmed/28420357
http://dx.doi.org/10.1186/s12913-017-2228-x
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