Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/24926
Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
Title: Outcomes measures in a decade of dementia and mild cognitive impairment trials
Authors: Harrison, Jennifer Kirsty
Noel-Storr, Anna H
Demeyere, Nele
Reynish, Emma
Quinn, Terry J
Keywords: Outcome
Dementia
Measurement
Cognition
Function
Quality of life
Mood
Behaviour
Patient-centred
Issue Date: 21-Nov-2016
Citation: Harrison JK, Noel-Storr AH, Demeyere N, Reynish E & Quinn TJ (2016) Outcomes measures in a decade of dementia and mild cognitive impairment trials, Alzheimer's Research and Therapy, 8 (1), Art. No.: 48.
Abstract: Background  In a research study, to give a comprehensive evaluation of the impact of interventions, the outcome measures should reflect the lived experience of the condition. In dementia studies, this necessitates the use of outcome measures which capture the range of disease effects, not limited to cognitive functioning. In particular, assessing the functional impact of cognitive impairment is recommended by regulatory authorities, but there is no consensus on the optimal approach for outcome assessment in dementia research. Our aim was to describe the outcome measures used in dementia and mild cognitive impairment (MCI) intervention studies, with particular interest in those evaluating patient-centred outcomes of functional performance and quality of life.  Methods  We performed a focused review of the literature with multiple embedded checks of internal and external validity. We used the Cochrane Dementia and Cognitive Improvement Group’s register of dementia studies, ALOIS. ALOIS was searched to obtain records of all registered dementia and MCI intervention studies over a 10-year period (2004–2014). We included both published and unpublished materials. Outcomes were categorised as cognitive, functional, quality of life, mood, behaviour, global/disease severity and institutionalisation.  Results  From an initial return of 3271 records, we included a total of 805 records, including 676 dementia trial records and 129 MCI trial records. Of these, 78% (630) originated from peer-reviewed publications and 60% (487) reported results of pharmacological interventions. Cognitive outcomes were reported in 70% (563), in contrast with 29% (237) reporting measures of functional performance and only 13% (102) reporting quality of life measures. We identified significant heterogeneity in the tools used to capture these outcomes, with frequent use of non-standardised tests.  Conclusions  This focus on cognitive performance questions the extent to which intervention studies for dementia are evaluating outcome measures which are relevant to individual patients and their carers. The heterogeneity in measures, use of bespoke tools and poor descriptions of test strategy all support the need for a more standardised approach to the conduct and reporting of outcomes assessments.
DOI Link: http://dx.doi.org/10.1186/s13195-016-0216-8
Rights: © The Author(s). 2016 This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Files in This Item:
File Description SizeFormat 
Harrison_etal_AR&T_2016.pdf848.36 kBAdobe PDFView/Open



This item is protected by original copyright



Items in the Repository are protected by copyright, with all rights reserved, unless otherwise indicated.

If you believe that any material held in STORRE infringes copyright, please contact library@stir.ac.uk providing details and we will remove the Work from public display in STORRE and investigate your claim.