TY - JOUR

T1 - Core outcome set for nonpharmacological community-based interventions for people living with dementia at home

T2 - A Systematic Review of Outcome Measurement Instruments

AU - Harding, Andrew

AU - Morbey, Hazel

AU - Ahmed, Faraz

AU - Opdebeeck, Carol

AU - Elvish, Ruth

AU - Leroi, Ira

AU - Williamson, Paula

AU - Keady, John

AU - Reilly, Siobhan

PY - 2021/12/31

Y1 - 2021/12/31

N2 - Background and Objectives: It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders’ value. We attained consensus from over 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 database. 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 co-research 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 COS items, and no OMIs proceeded to further assessment. The ‘best’ available OMI is the Engagement and Independence in Dementia Questionnaire (EID-Q).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.

AB - Background and Objectives: It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders’ value. We attained consensus from over 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 database. 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 co-research 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 COS items, and no OMIs proceeded to further assessment. The ‘best’ available OMI is the Engagement and Independence in Dementia Questionnaire (EID-Q).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.

KW - Dementia

KW - Alzheimer’s Disease

KW - Measurement

KW - Outcome

KW - Core outcome set

U2 - 10.1093/geront/gnaa071

DO - 10.1093/geront/gnaa071

M3 - Journal article

VL - 61

SP - e435-e448

JO - The Gerontologist

JF - The Gerontologist

SN - 0016-9013

IS - 8

ER -