Volkmer, Anna;
Hardy, Chris JD;
(2025)
An international core outcome set for Primary Progressive Aphasia (COS-PPA): Consensus-based.
Journal of Alzheimer’s and Dementia
, 21
(1)
, Article e14362. 10.1002/alz.14362.
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Abstract
INTRODUCTION: Interventions to treat speech-language difficulties in primary progressive aphasia (PPA) often use word accuracy as a highly comparable outcome. However, there are more constructs of importance to people with PPA that have received less attention. METHODS: Following Core Outcome Set Standards for Development Recommendations (COSSTAD), this study comprised: Stage 1 – systematic review to identify measures; Stage 2 – consensus groups to identify important outcome constructs for people with PPA (n = 82) and care partners (n = 91); Stage 3 – e-Delphi consensus with 57 researchers. RESULTS: The systematic review identified 84 Outcome Measurement Instruments. Core outcome constructs identified included: (1) Participate in conversations with family and friends, (2) get words out, (3) be more fluent, (4) convey a message by any means, and (5) understand what others are saying. Researchers were unable to reach a consensus on measurement instruments. DISCUSSION: Further work is required to develop appropriate measurement instruments that address all core outcome constructs important to key stakeholders.
| Type: | Article |
|---|---|
| Title: | An international core outcome set for Primary Progressive Aphasia (COS-PPA): Consensus-based |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1002/alz.14362 |
| Publisher version: | https://doi.org/10.1002/alz.14362 |
| Language: | English |
| Additional information: | This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. © 2024 The Author(s). Alzheimer’s & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer’s Association. |
| Keywords: | core outcome set, dementia, interventions, outcome measures, primary progressive aphasia, speech and language therapy |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Language and Cognition |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10200014 |
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