Lucy Webster
Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: Systematic review and consensus recommendations
Webster, Lucy; Groskreutz, Derek; Grinbergs-Saull, Anna; Howard, Rob; O'Brien, John T.; Mountain, Gail; Banerjee, Sube; Woods, Bob; Perneczky, Robert; Lafortune, Louise; Roberts, Charlotte; McCleery, Jenny; Pickett, James; Bunn, Frances; Challis, David; Charlesworth, Georgina; Featherstone, Katie; Fox, Chris; Goodman, Claire; Jones, Roy; Lamb, Sarah; Moniz-Cook, Esme; Schneider, Justine; Shepperd, Sasha; Surr, Claire; Thompson-Coon, Jo; Ballard, Clive; Brayne, Carol; Burns, Alistair; Clare, Linda; Garrard, Peter; Kehoe, Patrick; Passmore, Peter; Holmes, Clive; Maidment, Ian; Robinson, Louise; Livingston, Gill
Authors
Derek Groskreutz
Anna Grinbergs-Saull
Rob Howard
John T. O'Brien
Gail Mountain
Sube Banerjee
Bob Woods
Robert Perneczky
Louise Lafortune
Charlotte Roberts
Jenny McCleery
James Pickett
Frances Bunn
David Challis
Georgina Charlesworth
Katie Featherstone
Chris Fox
Claire Goodman
Roy Jones
Sarah Lamb
Professor Esme Moniz-Cook E.D.Moniz-Cook@hull.ac.uk
Emeritus Professor of Clinical Psychology of Ageing and Dementia Care Research / Dementia Research Work Group Lead
Justine Schneider
Sasha Shepperd
Claire Surr
Jo Thompson-Coon
Clive Ballard
Carol Brayne
Alistair Burns
Linda Clare
Peter Garrard
Patrick Kehoe
Peter Passmore
Clive Holmes
Ian Maidment
Louise Robinson
Gill Livingston
Abstract
Background
There are no disease-modifying treatments for dementia. There is also no consensus on disease modifying outcomes. We aimed to produce the first evidence-based consensus on core outcome measures for trials of disease modification in mild-to-moderate dementia.
Methods and findings
We defined disease-modification interventions as those aiming to change the underlying pathology. We systematically searched electronic databases and previous systematic reviews for published and ongoing trials of disease-modifying treatments in mild-to-moderate dementia. We included 149/22,918 of the references found; with 81 outcome measures from 125 trials. Trials involved participants with Alzheimer’s disease (AD) alone (n = 111), or AD and mild cognitive impairment (n = 8) and three vascular dementia. We divided outcomes by the domain measured (cognition, activities of daily living, biological markers, neuropsychiatric symptoms, quality of life, global). We calculated the number of trials and of participants using each outcome. We detailed psychometric properties of each outcome. We sought the views of people living with dementia and family carers in three cities through Alzheimer’s society focus groups. Attendees at a consensus conference (experts in dementia research, disease-modification and harmonisation measures) decided on the core set of outcomes using these results. Recommended core outcomes were cognition as the fundamental deficit in dementia and to indicate disease modification, serial structural MRIs. Cognition should be measured by Mini Mental State Examination or Alzheimer's Disease Assessment Scale-Cognitive Subscale. MRIs would be optional for patients. We also made recommendations for measuring important, but non-core domains which may not change despite disease modification.
Limitations
Most trials were about AD. Specific instruments may be superseded. We searched one database for psychometric properties.
Interpretation
This is the first review to identify the 81 outcome measures the research community uses for disease-modifying trials in mild-to-moderate dementia. Our recommendations will facilitate designing, comparing and meta-analysing disease modification trials in mild-to-moderate dementia, increasing their value.
Citation
Webster, L., Groskreutz, D., Grinbergs-Saull, A., Howard, R., O'Brien, J. T., Mountain, G., Banerjee, S., Woods, B., Perneczky, R., Lafortune, L., Roberts, C., McCleery, J., Pickett, J., Bunn, F., Challis, D., Charlesworth, G., Featherstone, K., Fox, C., Goodman, C., Jones, R., …Livingston, G. (2017). Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: Systematic review and consensus recommendations. PLoS ONE, 12(6), e0179521. https://doi.org/10.1371/journal.pone.0179521
Journal Article Type | Article |
---|---|
Acceptance Date | May 31, 2017 |
Online Publication Date | Jun 29, 2017 |
Publication Date | Jun 1, 2017 |
Deposit Date | Jul 9, 2018 |
Publicly Available Date | Jul 9, 2018 |
Journal | PLOS ONE |
Print ISSN | 1932-6203 |
Publisher | Public Library of Science |
Peer Reviewed | Peer Reviewed |
Volume | 12 |
Issue | 6 |
Pages | e0179521 |
DOI | https://doi.org/10.1371/journal.pone.0179521 |
Public URL | https://hull-repository.worktribe.com/output/917290 |
Publisher URL | http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0179521 |
Contract Date | Jul 9, 2018 |
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Copyright Statement
© 2017 Webster 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 credited.
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