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

Abstract

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.

The high cost of care and limited evidence on cost-effective strategies for Lewy body dementia: systematic review of evidence

“…Our team is presently undertaking a Delphi study to create a core outcome set standard for LBD, marking a significant step toward these goals. 6 …”

“…Our team is presently undertaking a Delphi study to create a core outcome set standard for LBD, marking a significant step toward these goals. 6 Although the evidence points towards higher costs of LBD, the review also highlighted a disproportionate scarcity of economic evaluations of interventions aimed explicitly at managing LBD. Compared with other forms of dementia, such as Alzheimer's disease and vascular disease, LBD appeared to be underrepresented in economic research.…”

“…[1][2][3] LBD is estimated to account for up to 15% of all dementia cases in older adults. 4,5 Given the prevalence and incidence of LBD, which is set to rise as the global populations age increases, 6 diagnosis and management of the disease become increasingly important for healthcare services.…”