Emilia Grycuk, Emily Eichenholtz, Dag Aarsland, Sara Betzhold, Gillian Daly, Ann-Kristin Folkerts, Elke Kalbe, Joseph Pm Kane, Irina Kinchin, Ian Saldanha, Valerie Smith, John-Paul Taylor, Rachel Thompson, Iracema Leroi
{"title":"为路易体痴呆症(DLB)开发核心结果集(COS)。","authors":"Emilia Grycuk, Emily Eichenholtz, Dag Aarsland, Sara Betzhold, Gillian Daly, Ann-Kristin Folkerts, Elke Kalbe, Joseph Pm Kane, Irina Kinchin, Ian Saldanha, Valerie Smith, John-Paul Taylor, Rachel Thompson, Iracema Leroi","doi":"10.12688/hrbopenres.13590.2","DOIUrl":null,"url":null,"abstract":"<p><p><b>Background:</b> 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. <b>Methods:</b> 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 systematic review 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. <b>Discussion:</b> 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. <b>Keywords</b>: Dementia, Dementia with Lewy Bodies, Core Outcome Set, Delphi, Systematic Review, Ageing, Cognition, Memory.</p>","PeriodicalId":73254,"journal":{"name":"HRB open research","volume":null,"pages":null},"PeriodicalIF":0.0000,"publicationDate":"2023-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9772580/pdf/","citationCount":"0","resultStr":"{\"title\":\"Developing a core outcome set (COS) for Dementia with Lewy bodies (DLB).\",\"authors\":\"Emilia Grycuk, Emily Eichenholtz, Dag Aarsland, Sara Betzhold, Gillian Daly, Ann-Kristin Folkerts, Elke Kalbe, Joseph Pm Kane, Irina Kinchin, Ian Saldanha, Valerie Smith, John-Paul Taylor, Rachel Thompson, Iracema Leroi\",\"doi\":\"10.12688/hrbopenres.13590.2\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p><b>Background:</b> 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. <b>Methods:</b> 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 systematic review 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. <b>Discussion:</b> 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. <b>Keywords</b>: Dementia, Dementia with Lewy Bodies, Core Outcome Set, Delphi, Systematic Review, Ageing, Cognition, Memory.</p>\",\"PeriodicalId\":73254,\"journal\":{\"name\":\"HRB open research\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2023-10-10\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9772580/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"HRB open research\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.12688/hrbopenres.13590.2\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2022/1/1 0:00:00\",\"PubModel\":\"eCollection\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"HRB open research","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.12688/hrbopenres.13590.2","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2022/1/1 0:00:00","PubModel":"eCollection","JCR":"","JCRName":"","Score":null,"Total":0}
Developing a core outcome set (COS) for Dementia with Lewy bodies (DLB).
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 systematic review 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. Keywords: Dementia, Dementia with Lewy Bodies, Core Outcome Set, Delphi, Systematic Review, Ageing, Cognition, Memory.