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© 2023 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.
Author(s): Grycuk E, Eichenholtz E, Aarsland D, Betzhold S, Daly G, Fitzpatrick R, 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: 2023
Volume: 5
Online publication date: 10/10/2023
Acceptance date: 02/04/2023
Date deposited: 03/04/2024
ISSN (electronic): 2515-4826
Publisher: F1000 Research Ltd
URL: https://doi.org/10.12688/hrbopenres.13590.2
DOI: 10.12688/hrbopenres.13590.2
Data Access Statement: Underlying data 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). https://doi.org/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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