The development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): a large-scale data sharing initiative

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dc.contributor.authorLutomski, Jennifer E.
dc.contributor.authorBaars, Maria A. E.
dc.contributor.authorSchalk, Bianca W. M.
dc.contributor.authorBoter, Han
dc.contributor.authorBuurman, Bianca M.
dc.contributor.authorden Elzen, Wendy P. J.
dc.contributor.authorJansen, Aaltje P. D.
dc.contributor.authorKempen, Gertrudis I. J. M.
dc.contributor.authorSteunenberg, Bas
dc.contributor.authorSteyerberg, Ewout W.
dc.contributor.authorRikkert, Marcel G. M. Olde
dc.contributor.authorMelis, René J. F.
dc.contributor.funderZonMw
dc.date.accessioned2016-02-17T11:44:42Z
dc.date.available2016-02-17T11:44:42Z
dc.date.issued2013
dc.description.abstractIntroduction: In 2008, the Ministry of Health, Welfare and Sport commissioned the National Care for the Elderly Programme. While numerous research projects in older persons' health care were to be conducted under this national agenda, the Programme further advocated the development of The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) which would be integrated into all funded research protocols. In this context, we describe TOPICS data sharing initiative (www.topics-mds.eu). Materials and Methods: A working group drafted TOPICS-MDS prototype, which was subsequently approved by a multidisciplinary panel. Using instruments validated for older populations, information was collected on demographics, morbidity, quality of life, functional limitations, mental health, social functioning and health service utilisation. For informal caregivers, information was collected on demographics, hours of informal care and quality of life (including subjective care-related burden). Results: Between 2010 and 2013, a total of 41 research projects contributed data to TOPICS-MDS, resulting in preliminary data available for 32,310 older persons and 3,940 informal caregivers. The majority of studies sampled were from primary care settings and inclusion criteria differed across studies. Discussion: TOPICS-MDS is a public data repository which contains essential data to better understand health challenges experienced by older persons and informal caregivers. Such findings are relevant for countries where increasing health-related expenditure has necessitated the evaluation of contemporary health care delivery. Although open sharing of data can be difficult to achieve in practice, proactively addressing issues of data protection, conflicting data analysis requests and funding limitations during TOPICS-MDS developmental phase has fostered a data sharing culture. To date, TOPICS-MDS has been successfully incorporated into 41 research projects, thus supporting the feasibility of constructing a large (>30,000 observations), standardised dataset pooled from various study protocols with different sampling frameworks. This unique implementation strategy improves efficiency and facilitates individual-level data meta-analysis.en
dc.description.sponsorshipZonMw (Netherlands Organisation for Health Research and Development National Care for the Elderly Programme Grant No. 60-61900-98-371)en
dc.description.statusPeer revieweden
dc.description.versionPublished Versionen
dc.format.mimetypeapplication/pdfen
dc.identifier.articleide81673
dc.identifier.citationLutomski JE, Baars MAE, Schalk BWM, Boter H, Buurman BM, den Elzen WPJ, et al. (2013) The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative. PLoS ONE 8(12): e81673. doi:10.1371/journal.pone.0081673
dc.identifier.doi10.1371/journal.pone.0081673
dc.identifier.issn1932-6203
dc.identifier.issued12en
dc.identifier.journaltitlePLOS ONEen
dc.identifier.urihttps://hdl.handle.net/10468/2352
dc.identifier.volume8en
dc.language.isoenen
dc.publisherPublic Library of Scienceen
dc.rights© 2015 Lutomski et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are crediteden
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/en
dc.subjectQuality of lifeen
dc.subjectResident assessment instrumenten
dc.subjectFunctional statusen
dc.subjectElderly peopleen
dc.subjectFrailty indexen
dc.subjectData seten
dc.subjectCareen
dc.subjectMetaanalysisen
dc.subjectMortalityen
dc.subjectRAND-36en
dc.titleThe development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): a large-scale data sharing initiativeen
dc.typeArticle (peer-reviewed)en
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