Evidence map›Paper›PMID 28662127›Full record

SynthesisPloS one2017

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.

Lucy Webster, Derek Groskreutz, Anna Grinbergs-Saull, Rob Howard, John T O'Brien, Gail Mountain, Sube Banerjee, Bob Woods, Robert Perneczky, Louise Lafortune and 27 more

Abstract readSystematic ReviewValidation StudyConsensus Statement
In one paragraph

Synthesis in PloS one, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 43 papers, 9 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
43citing papers in PubMed, 9 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

43 citing papers in PubMed, 9 syntheses or guidelines pooled it.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

37 authors.

Lucy WebsterDivision of Psychiatry, University College London, London, United Kingdom.ORCID http://orcid.org/0000-0001-9152-4990
Derek GroskreutzDivision of Psychology and Language Sciences, University College London, London, United Kingdom.
Anna Grinbergs-SaullAlzheimer's Society, London, United Kingdom.
Rob HowardDivision of Psychiatry, University College London, London, United Kingdom.
John T O'BrienDepartment of Psychiatry, University of Cambridge, Cambridge, United Kingdom.
Gail MountainScHARR, University of Sheffield, Sheffield, United Kingdom.
Sube BanerjeeCentre for Dementia Studies, Brighton and Sussex Medical School, Brighton, United Kingdom.ORCID http://orcid.org/0000-0002-8083-7649
Bob WoodsDementia Services Development Centre Wales, Bangor University, Bangor, United Kingdom.
Robert PerneczkyFaculty of Medicine, School of Public Health, Imperial College London, London, United Kingdom.
Louise LafortuneCambridge Institute of Public Health, University of Cambridge, Cambridge, United Kingdom.ORCID http://orcid.org/0000-0002-9018-1217
Charlotte RobertsInternational Consortium for Health Outcomes Measurement, London, United Kingdom.ORCID http://orcid.org/0000-0003-2679-7815
Jenny McCleeryOxford Health NHS Foundation Trust, Oxford, United Kingdom.
James PickettAlzheimer's Society, London, United Kingdom.
Frances BunnCentre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, United Kingdom.ORCID http://orcid.org/0000-0002-5885-918X
David ChallisPersonal Social Services Research Unit, University of Manchester, Manchester, United Kingdom.
Georgina CharlesworthResearch Department of Clinical, Educational, and Health Psychology, University College London, London, United Kingdom.
Katie FeatherstoneSchool of Healthcare Sciences, Cardiff University, Cardiff, United Kingdom.
Chris FoxNorwich Medical School, University of East Anglia, Norwich, United Kingdom.ORCID http://orcid.org/0000-0001-9480-5704
Claire GoodmanCentre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, United Kingdom.ORCID http://orcid.org/0000-0002-8938-4893
Roy JonesResearch Institute for the Care of Older People (RICE), University of Bath, Bath, United Kingdom.
Sarah LambWarwick Clinical Trials Research Unit, University of Warwick, Warwick, United Kingdom.ORCID http://orcid.org/0000-0003-4349-7195
Esme Moniz-CookFaculty of Health and Social Care, University of Hull, Hull, United Kingdom.ORCID http://orcid.org/0000-0002-7232-4632
Justine SchneiderInstitute of Mental Health, University of Nottingham, Nottingham, United Kingdom.
Sasha ShepperdNuffield Department of Population Health, University of Oxford, Oxford, United Kingdom.
Claire SurrSchool of Health & Community Studies, Leeds Beckett University, Leeds, United Kingdom.ORCID http://orcid.org/0000-0002-4312-6661
Jo Thompson-CoonPenCLAHRC, University of Exeter Medical School, Exeter, United Kingdom.
Clive BallardWolfson Centre for Age-Related Diseases, King's College London, London, United Kingdom.
Carol BrayneCambridge Institute of Public Health, University of Cambridge, Cambridge, United Kingdom.ORCID http://orcid.org/0000-0001-5307-663X
Alistair BurnsInstitute of Brain, Behaviour and Mental Health, University of Manchester, Manchester, United Kingdom.
Linda ClarePenCLAHRC, University of Exeter Medical School, Exeter, United Kingdom.ORCID http://orcid.org/0000-0003-3989-5318
Peter GarrardNeuroscience Research Centre, St. George's, University of London, London, United Kingdom.
Patrick KehoeSchool of Clinical Sciences, University of Bristol, Bristol, United Kingdom.
Peter PassmoreCentre for Public Health, Queen's University Belfast, Belfast, United Kingdom.
Clive HolmesSchool of Medicine, University of Southampton, Southampton, United Kingdom.ORCID http://orcid.org/0000-0003-1999-6912
Ian MaidmentAston Research Centre for Healthy Ageing, Aston University, Birmingham, United Kingdom.ORCID http://orcid.org/0000-0003-4152-9704
Louise RobinsonInstitute of Health and Society, Newcastle University, Newcastle upon Tyne, United Kingdom.
Gill LivingstonDivision of Psychiatry, University College London, London, United Kingdom.ORCID http://orcid.org/0000-0001-6741-5516

Funding

Department of Health 13/10/80Department of Health 15/136/67Department of Health HTA/15/62/02Department of Health NIHR-RP-011-043Department of Health RP-PG-0606-1067Medical Research Council G0801370Medical Research Council MC_PC_13088Medical Research Council MR/N025881/1
6 · The paper itself

Abstract

backgroundThere 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

findingsWe 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.

interpretationThis 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.

trial registrationPROSPERO no. CRD42015027346.

Indexed as

DementiaDisease ProgressionFocus GroupsHumansOutcome Assessment, Health Care

Identifiers

PMID28662127
PMCPMC5491018

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.