The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative
| Autor: | Lutomski, J.E., Baars, M.A.E., Schalk, B.W.M., Boter, H., Buurman, B.M., Elzen, W.P.J. den, Jansen, A.P.D., Kempen, G.I.J.M., Steunenberg, B., Steyerberg, E.W., Rikkert, M.G.M.O., Melis, R.J.F., TOPICS-MDS Consortium |
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| Přispěvatelé: | General practice, EMGO - Quality of care, Health Services Research, RS: Academische Werkplaats Ouderenzorg, Psychiatrie & Neuropsychologie, RS: CAPHRI School for Public Health and Primary Care, Public Health, Methods in Medicines evaluation & Outcomes research (M2O), APH - Amsterdam Public Health, AMS - Amsterdam Movement Sciences, Geriatrics, ACS - Amsterdam Cardiovascular Sciences, ANS - Amsterdam Neuroscience, Other Research |
| Jazyk: | angličtina |
| Rok vydání: | 2013 |
| Předmět: |
Male
RAND-36 lcsh:Medicine Care Information repository 0302 clinical medicine QUALITY-OF-LIFE Alzheimer Centre [DCN PAC - Perception action and control NCEBP 11] Health care Medicine 030212 general & internal medicine lcsh:Science Netherlands Multidisciplinary DATA SET Health services research Metaanalysis 3. Good health Caregivers Databases as Topic FUNCTIONAL STATUS Female Research Article Quality of life Data set RESIDENT ASSESSMENT INSTRUMENT Information Dissemination Context (language use) Elderly people ELDERLY-PEOPLE 03 medical and health sciences Quality of life (healthcare) Nursing SDG 3 - Good Health and Well-being Humans Alzheimer Centre [NCEBP 11] Mortality METAANALYSIS Aged Demography Resident assessment instrument Frailty index business.industry MORTALITY lcsh:R Functional status CARE Mental health Data sharing Evaluation of complex medical interventions [NCEBP 2] Health Care Surveys Quality of Life FRAILTY INDEX lcsh:Q business 030217 neurology & neurosurgery |
| Zdroj: | PLoS ONE, 8(12) PLoS ONE, 8(12):e81673. Public Library of Science PLOS ONE, 8(12):e81673. Public Library of Science PLoS One (print), 8(12). Public Library of Science PLoS One, 8, 12 PLoS ONE PLoS One, 8 PLoS ONE, 8(12):e81673. PUBLIC LIBRARY SCIENCE PLoS ONE, Vol 8, Iss 12, p e81673 (2013) PLoS ONE, 8(12). Public Library of Science Lutomski, J E, Baars, M A, Schalk, B W, Boter, H, Buurman, B M, den Elzen, W P, Jansen, A P D, Kempen, G I, Steunenberg, B, Steyerberg, E W, Olde Rikkert, M G M & Melis, R J 2013, ' The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative ', PLoS ONE, vol. 8, no. 12, e81673 . https://doi.org/10.1371/journal.pone.0081673 |
| ISSN: | 1932-6203 |
| Popis: | Contains fulltext : 128572.pdf (Publisher’s version ) (Open Access) INTRODUCTION: 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. |
| Databáze: | OpenAIRE |
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