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      End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis

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          Abstract

          Background

          Dementia with Lewy bodies (DLB) is one of the most common degenerative dementias, but research on end-of-life experiences for people with DLB and their caregivers is limited.

          Method

          Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries and followed prospectively every 6 months. The current study examines results of caregiver study visits 3 months after the death of the person with DLB. These visits included the Last Month of Life survey, study-specific questions, and a semi-structured interview querying end-of-life experiences.

          Results

          Individuals with DLB (n = 50) died 3.24 ± 1.81 years after diagnosis, typically of disease-related complications. Only 44% of caregivers reported a helpful conversation with clinicians regarding what to expect at the end of life in DLB. Symptoms commonly worsening prior to death included: cognition and motor function, ADL dependence, behavioral features, daytime sleepiness, communication, appetite, and weight loss. Almost 90% of participants received hospice care, but 20% used hospice for <1 week. Most caregivers reported overall positive experiences in the last month of life, but this was not universal. Having information about DLB and what to expect, access to support, and hospice care were healthcare factors associated with positive and negative end of life experiences. Hospice experiences were driven by communication, care coordination, quality care, and caregiver education.

          Conclusion

          Most caregivers of individuals who died with DLB reported positive end-of-life experiences. However, the study identified multiple opportunities for improvement relating to clinician counseling of patients/families, support/hospice referrals, and monitoring individuals with DLB to identify approaching end of life. Future research should quantitatively identify changes that herald end of life in DLB and develop tools that can assist clinicians in evaluating disease stage to better inform counseling and timely hospice referrals.

          Trial registration

          Trial registration information: NCT04829656.

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          Most cited references47

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          Using thematic analysis in psychology

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            Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

            Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.
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              Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.

              Qualitative research explores complex phenomena encountered by clinicians, health care providers, policy makers and consumers. Although partial checklists are available, no consolidated reporting framework exists for any type of qualitative design. To develop a checklist for explicit and comprehensive reporting of qualitative studies (in depth interviews and focus groups). We performed a comprehensive search in Cochrane and Campbell Protocols, Medline, CINAHL, systematic reviews of qualitative studies, author or reviewer guidelines of major medical journals and reference lists of relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. Duplicate items and those that were ambiguous, too broadly defined and impractical to assess were removed. Items most frequently included in the checklists related to sampling method, setting for data collection, method of data collection, respondent validation of findings, method of recording data, description of the derivation of themes and inclusion of supporting quotations. We grouped all items into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.
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                Author and article information

                Contributors
                Role: Formal analysisRole: Writing – original draftRole: Writing – review & editing
                Role: InvestigationRole: Project administrationRole: Writing – review & editing
                Role: Data curationRole: Formal analysisRole: Writing – review & editing
                Role: ConceptualizationRole: Project administrationRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: Project administrationRole: SupervisionRole: Writing – review & editing
                Role: Project administrationRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: Project administrationRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: Project administrationRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: Project administrationRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: Project administrationRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: Project administrationRole: Writing – review & editing
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: Funding acquisitionRole: Project administrationRole: SupervisionRole: Writing – review & editing
                Role: InvestigationRole: Project administrationRole: Writing – review & editing
                Role: ConceptualizationRole: Formal analysisRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: SupervisionRole: Writing – original draftRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS One
                plos
                PLOS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                29 August 2024
                2024
                : 19
                : 8
                : e0309530
                Affiliations
                [1 ] Department of Health Outcomes and Biomedical Informatics, University of Florida College of Medicine, Gainesville, Florida, United States of America
                [2 ] Department of Neurology, University of Florida College of Medicine, Gainesville, Florida, United States of America
                [3 ] Norman Fixel Institute for Neurological Diseases, Gainesville, Florida, United States of America
                [4 ] Department of Biostatistics, University of Florida College of Medicine, Gainesville, Florida, United States of America
                [5 ] Department of Psychiatry, University of Michigan, Ann Arbor, Michigan, United States of America
                [6 ] Department of Neurology, University of Michigan, Ann Arbor, Michigan, United States of America
                [7 ] Department of Neurology, University of Virginia, Charlottesville, Virginia, United States of America
                [8 ] Department of Psychiatry and Psychology, Mayo Clinic, Rochester, Minnesota, United States of America
                [9 ] Department of Neurology, Mayo Clinic, Rochester, Minnesota, United States of America
                [10 ] Department of Neurology, Comprehensive Center for Brain Health, University of Miami Miller School of Medicine, Miami, Florida, United States of America
                [11 ] Lewy Body Dementia Association, Lilburn, Georgia, United States of America
                Kampala International University - Western Campus, UGANDA
                Author notes

                Competing Interests: I have read the journal’s policy and the authors of this manuscript have the following competing interests: EW, BL, SMM, ZL, and HJF report no competing interests. HLP: HLP receives funding from the NIA (1P30AG053760) and is the local PI of a Lewy Body Dementia Association Research Center of Excellence. CM: CM receives research support from ACL/DHHS (90ALGG0014-01-00), NIA/NIH (2SB1AG037357-04A1, R01-AG-054435), HRSA (U1QHP287440400) and DoD (AZ190036). She is the local PI of a Lewy Body Dementia Association Research Center of Excellence. JAF: JAF receives research support from the NIA (U01NS100620, R01AG068128, R43AG65088). AL: AL receives research support from the NIA (P30AG62677, R43AG65088). She is a Program Coordinator for the local a Lewy Body Dementia Association Coordinating Center Research Center of Excellence. BFB: BFB has served as an investigator for clinical trials sponsored by Biogen, Alector, and EIP Pharma. He serves on the Scientific Advisory Board of the Lewy Body Dementia Association, Association for Frontotemporal Degeneration, and Tau Consortium. He is the site PI of a Lewy Body Dementia Association Research Center of Excellence program, as well as coordinating center PI of the program. He receives research support from the NIH, the Mayo Clinic Dorothy and Harry T. Mangurian Jr. Lewy Body Dementia Program, and the Little Family Foundation. JEG: JEG is the creator of the QDRS and the LBCRS. He is supported by grants from the National Institutes of Health (R01 AG069765, R01 AG057681, R01 NS101483, P30 AG059295, U54 AG06354, R01 AG056531, U01 NS100610, R01 AG056610, R01 AG054425, R01 AG068128) and the Leo and Anne Albert Charitable Trust. He is the local PI of the Lewy Body Dementia Association Research Center of Excellence at the University of Miami and serves on the Scientific Advisory Board of the Lewy Body Dementia Association. AST: AST is an employee of the Lewy Body Dementia Association. MJA: MJA receives research support from the NIH (R01AG068128, P30AG066506, R01NS121099, R44AG062072), the Florida Department of Health (grants 20A08, 24A14, 24A15), and as the local PI of a Lewy Body Dementia Association Research Center of Excellence. She serves on the DSMBs for the Alzheimer’s Therapeutic Research Institute/Alzheimer’s Clinical Trial Consortium and the Alzheimer’s Disease Cooperative Study. She has provided educational content for Medscape, Vindico CME, and Prime Inc. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

                Author information
                https://orcid.org/0009-0001-6566-6861
                https://orcid.org/0000-0002-2163-1907
                Article
                PONE-D-24-08238
                10.1371/journal.pone.0309530
                11361593
                39208192
                0461f4e8-76ae-413b-9503-606073aef303
                © 2024 Wollney et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 8 March 2024
                : 13 August 2024
                Page count
                Figures: 1, Tables: 3, Pages: 19
                Funding
                Funded by: funder-id http://dx.doi.org/10.13039/100000049, National Institute on Aging;
                Award ID: R01AG068128
                Award Recipient :
                Funded by: funder-id http://dx.doi.org/10.13039/100006108, National Center for Advancing Translational Sciences;
                Award ID: UL1TR001427
                This work was supported by the National Institutes on Aging grant number R01AG068128. Research reported in this publication was supported by the University of Florida Clinical and Translational Science Institute (hosting REDCap), which is supported in part by the NIH National Center for Advancing Translational Sciences under award number UL1TR001427. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health/National Institutes on Aging. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                Medicine and Health Sciences
                Health Care
                Caregivers
                Medicine and Health Sciences
                Health Care
                End of Life Care
                Medicine and Health Sciences
                Mental Health and Psychiatry
                Dementia
                Medicine and Health Sciences
                Neurology
                Dementia
                Medicine and health sciences
                Mental health and psychiatry
                Dementia
                Dementia with Lewy bodies
                Medicine and health sciences
                Neurology
                Dementia
                Dementia with Lewy bodies
                Biology and Life Sciences
                Physiology
                Physiological Processes
                Respiration
                Breathing
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                Cell Biology
                Cellular Types
                Animal Cells
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                Neuroscience
                Cellular Neuroscience
                Neurons
                Lewy Bodies
                Medicine and Health Sciences
                Mental Health and Psychiatry
                Dementia
                Alzheimer's Disease
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                Dementia
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                Medicine and Health Sciences
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                Alzheimer's Disease
                Medicine and Health Sciences
                Neurology
                Neurodegenerative Diseases
                Alzheimer's Disease
                Biology and Life Sciences
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                Physiological Processes
                Sleep
                Custom metadata
                All relevant data are within the paper and its Supporting Information files. Individual participant demographic data and descriptive quantitative data presented in this paper are available in the S1 Table. The codebook with relevant excerpts is available in S3 File to supplement the quotes provided in the paper.

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