Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Nov 15;61(8):e435-e448.
doi: 10.1093/geront/gnaa071.

A Core Outcome Set for Nonpharmacological Community-Based Interventions for People Living With Dementia at Home: A Systematic Review of Outcome Measurement Instruments

Andrew J E Harding  1 , Hazel Morbey  1 , Faraz Ahmed  1 , Carol Opdebeeck  2 , Ruth Elvish  3 , Iracema Leroi  4 , Paula R Williamson  5 , John Keady  3   6 , Siobhan T Reilly  1
Affiliations

A Core Outcome Set for Nonpharmacological Community-Based Interventions for People Living With Dementia at Home: A Systematic Review of Outcome Measurement Instruments

Andrew J E Harding et al. Gerontologist. .

Abstract

Background and objectives: It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders' value. We attained consensus from more than 300 key stakeholders, including people living with dementia, and identified 13 core outcome items for use in nonpharmacological and community-based interventions for people with dementia living at home. In this systematic review, we review OMIs that have previously been used in dementia care research to determine how, or even if, the 13 core outcome items can be measured.

Research design and methods: We extracted self-reported OMIs from trials, reviews, and reports of instrument development. Searches were undertaken in the ALOIS database, MEDLINE, PsycINFO, CINAHL, SocINDEX, and COSMIN databases. We aimed to assess the psychometric properties of OMI items for face validity with the core outcome items, content validity, internal consistency, and responsiveness. We held a coresearch workshop involving people living with dementia and care partners in order to ratify the findings.

Results: In total 347 OMIs were located from 354 sources. Of these, 76 OMIs met the inclusion criteria. No OMIs were deemed to have sufficient face validity for the core outcome set (COS) items, and no OMIs proceeded to further assessment. The "best" available OMI is the Engagement and Independence in Dementia Questionnaire.

Discussion and implications: This study provides a practical resource for those designing dementia research trials. Being able to measure the COS items would herald a paradigm shift for dementia research, be responsive to what key stakeholders value and enhance the ability to make comparisons.

Keywords: Alzheimer’s disease; Core outcome set; Dementia; Measurement; Outcome.

PubMed Disclaimer

Figures

Figure 1.
Figure 1.
Final Core Outcome Set (COS): thirteen core outcome items categorized under the domains used within the Delphi.
Figure 2.
Figure 2.
PRISMA flowchart for literature search.
See this image and copyright information in PMC

References

    1. Abendstern, M., Davies, K., Poland, F., Chester, H., Clarkson, P., Hughes, J.,...Challis, D. (2019). Reflecting on the research encounter for people in the early stages of dementia: Lessons from an embedded qualitative study. Dementia. doi: 10.1177/1471301219855295 - DOI - PubMed
    1. Bowling, A. (2005). Techniques of questionnaire design. In Bowling A. & Ebrahim S. (Eds.), Handbook of health research methods: Investigation, measurement and analysis (pp. 394–427). Open University Press.
    1. Bowling, A., Rowe, G., Adams, S., Sands, P., Samsi, K., Crane, M.,...Manthorpe, J. (2015). Quality of life in dementia: A systematically conducted narrative review of dementia-specific measurement scales. Aging & Mental Health, 19(1), 13–31. doi: 10.1080/13607863.2014.915923 - DOI - PubMed
    1. Bramer, W. M., Rethlefsen, M. L., Kleijnen, J., & Franco, O. H. (2017). Optimal database combinations for literature searches in systematic reviews: A prospective exploratory study. Systematic Reviews, 6(1), 245. doi: 10.1186/s13643-017-0644-y - DOI - PMC - PubMed
    1. Chalmers, I., & Glasziou, P. (2009). Avoidable waste in the production and reporting of research evidence. The Lancet, 374(9683), 86–89. doi: 10.1016/S0140-6736(09)60329-9 - DOI - PubMed

Publication types