Costello, E. orcid.org/0000-0001-8620-9531, De Vocht, J., Beswick, E. et al. (29 more authors) (2025) Neuropsychological assessment practices in PRECISION-ALS: challenges and opportunities for harmonization. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. ISSN: 2167-8421
Abstract
Objective: To gather comprehensive insights regarding current neuropsychological assessment practices in PRECISION-ALS, a pan-European research and industry consortium, to propose areas which can be harmonized and facilitate more robust cross-country comparisons. Methods: Representatives from PRECISION-ALS sites were surveyed with a semi-structured interview, gathering information on how people with ALS are assessed for cognitive/behavioral change, including how they are initially screened, classified as impaired/unimpaired, and followed up longitudinally. Assessment practices across PRECISION-ALS sites were summarized using descriptive analysis. Results: Ten of the eleven PRECISION-ALS sites perform cognitive and/or behavioral screening at least once during the course of the disease, using the Edinburgh Cognitive and Behavioral ALS Screen, either for clinical or research purposes. All centers categorize impairment, but differ how it is defined, with some using local norms, and others using other countries’ norms. Most sites account for age and education, but differ in how these factors are considered. Longitudinal protocols vary in terms of the number of assessments, time intervals, and use of alternative versions. Behavioral screening is more consistently implemented, with the ECAS caregiver interview as the standard tool, however there is a lack of clarity in how this data is applied. Many sites supplement cognitive and behavioral screening with additional measures of mood and/or neuropsychiatric symptoms. Conclusions: These findings illustrate areas of commonality and divergence in neuropsychological screening practices. Site-specific variations are likely to confound research involving cross-country data-sharing. PRECISION-ALS, in generating prospective population-based datasets, will provide agreed harmonized protocols for neuropsychological assessment across participating sites.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent. |
Keywords: | Cognition; behaviour; Amyotrophic Lateral Sclerosis; ECAS |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Medicine and Population Health |
Funding Information: | Funder Grant number Economic and Social Research Council ES/L008238/1 National Institute for Health and Care Research IS-BRC-1215-20017 DEPARTMENT OF HEALTH AND SOCIAL CARE NIHR301648 Medical Research Council MR/L501529/1 National Institute for Health and Care Research NF-SI-0617-10077 |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 30 Jul 2025 15:29 |
Last Modified: | 30 Jul 2025 15:29 |
Published Version: | https://doi.org/10.1080/21678421.2025.2527877 |
Status: | Published online |
Publisher: | Taylor & Francis |
Refereed: | Yes |
Identification Number: | 10.1080/21678421.2025.2527877 |
Sustainable Development Goals: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:229811 |
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