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Developing a core outcome set (COS) for Dementia with Lewy bodies (DLB)

Lookup NU author(s): Professor John-Paul TaylorORCiD



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Copyright: © 2022 Grycuk E et al. Background: Dementia with Lewy bodies (DLB) is an important cause of dementia with a range of clinical manifestations, including motor, neuropsychiatric, and autonomic symptoms. Compared with more common forms of dementia such as Alzheimer’s disease, DLB has been the focus of significantly fewer treatment studies, often with diverse outcome measures, making comparison and clinical implementation difficult. A core outcome set (COS) can address this by ensuring that data are comparable, relevant, useful, and usable for making the best healthcare decisions. Methods: Using a multi-stage approach, development of the DLB-COS will include the following stages: (1) A systematic review, following PRISMA guidelines to create an initial long list of outcomes; (2) A two-round online Delphi including clinicians, scientists, policymakers, and individuals with lived experience of DLB and their representatives; (3) An online consensus meeting to agree on the final core list of outcomes (the final DLB-COS) for use in research and clinical practice; (4) A literature search to identify appropriate measurement instruments for the DLB-COS outcomes; (5) A final consensus meeting of the professional stakeholders who attended the online consensus meeting to agree on the instruments that should be used to measure the outcomes in the DLB-COS; and (6) Global dissemination. Discussion: This is a multi-stage project to develop a COS to be used in treatment trials for DLB. A DLB-COS will ensure the selection of relevant outcomes and will identify the instruments to be used to measure DLB globally.

Publication metadata

Author(s): Grycuk E, Eichenholtz E, Aarsland D, Betzhold S, Daly G, Folkerts A-K, Kalbe E, Kane JPM, Kinchin I, Saldanha IJ, Smith V, Taylor J-P, Thompson R, Leroi I

Publication type: Article

Publication status: Published

Journal: HRB Open Research

Year: 2022

Volume: 5

Online publication date: 18/08/2022

Acceptance date: 18/08/2022

Date deposited: 18/09/2023

ISSN (electronic): 2515-4826

Publisher: F1000 Research Ltd


DOI: 10.12688/hrbopenres.13590.1

Data Access Statement: Underlying data which is relevant to this protocol include the following studies; - Rodriguez-Porcel, F., Wyman-Chick, K.A., Abdelnour Ruiz, C. et al. Clinical outcome measures in dementia with Lewy bodies trials: critique and recommendations. Transl Neurodegener 11, 24 (2022). 10.1186/s40035-022-00299-w - Patel B, Irwin DJ, Kaufer D, Boeve BF, Taylor A, Armstrong MJ. Outcome Measures for Dementia With Lewy Body Clinical Trials: A Review. Alzheimer Dis Assoc Disord. 2022;36(1):64-72. doi:10.1097/ WAD.0000000000000473 These studies highlight the need for development of a COS in this area.


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Funder referenceFunder name
Health Research Board Ireland, Clinical Research Network grant