Developing a core outcome set (COS) for Dementia with Lewy bodies (DLB) [version 1; peer review: 1 approved, 2 approved with reservations]

Emilia Grycuk, Emily Eichenholtz, Dag Aarsland, Sara Betzhold, Gillian Daly, Ann-Kristin Folkerts, Elke Kalbe, Joseph Kane, Irina Kinchin, Ian Saldanha, Valerie Smith, John-Paul Taylor, Rachel Thompson, Iracema Leroi

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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. 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. 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. [Abstract copyright: Copyright: © 2022 Grycuk E et al.]
Original languageEnglish
Article number57
Number of pages15
JournalHealth Research Board Open Research
Early online date18 Aug 2022
Publication statusPublished - 03 Oct 2022


  • Memory
  • Dementia with Lewy Bodies
  • Ageing
  • Delphi
  • Systematic Review
  • Core Outcome Set
  • Cognition
  • Dementia


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