Identifying Factors Predicting ACcurately End-of-Life in Dementia with Lewy Bodies and Promoting Quality End-of-Life Experiences: the PACE-DLB Study

识别准确预测路易体痴呆症临终的因素并提升临终体验质量：PACE-DLB 研究

• 批准号: 10380453
• 负责人: Melissa Jo Armstrong
• 金额: $ 10.08万
• 依托单位: UNIVERSITY OF FLORIDA
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-15 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10380453
• 关键词: Address; Affect; Alzheimer' s disease related dementia; Area; Behavioral; Bereavement; Caregivers; Caring; Centers of Research Excellence; Cessation of life; Characteristics; Climacteric; Clinical; Cognitive; Counseling; Dementia; Dementia with Lewy Bodies; Enrollment; Face; Failure to Thrive; Family; Future; Grief reaction; Health Personnel; Individual; Intervention; Knowledge; Lewy Body Dementia; Life; Life Experience; Longitudinal cohort study; Measures; Medical; Modeling; Motor; Movement Disorder Society Unified Parkinson' s Disease Rating Scale; National Institute on Aging; Parents; Patients; Persons; Physicians; Predictive Factor; Publishing; Quality of Care; Quality of life; Recovery; Reporting; Series; Severities; Sleep; Symptoms; Telephone; Visit; base; cohort; demographics; end of life; end of life care; evidence base; experience; improved; medical specialties; novel; recruit; resilience; satisfaction; virtual

PARENT R01 PROJECT SUMMARY/ABSTRACT Dementia with Lewy bodies (DLB) is part of Lewy body dementia, the 2nd-most-common degenerative dementia in the U.S. It is also one of the Alzheimer’s disease-related dementias (ADRDs). Evidence-based models of end-of-life care for ADRDs are insufficient; families face difficult medical decisions with little information for guidance. This is particularly relevant for DLB, where >70% of individuals die of the dementia itself or failure to thrive. Caregivers describe lack of knowledge of what to expect at the end of life as an important driver of negative end-of-life experiences. The proposed study addresses this unmet need. It also addresses the National Institute on Aging’s priority to improve quality of care and quality of life for persons with ADRDs at the end of life and their caregivers. This study aims to (1) determine the predictors of death within 6 months in individuals with DLB, (2) identify whether a change in caregiver measures can predict approaching end of life of individuals with DLB, and (3) identify factors that affect quality end of life experiences for persons with DLB and their caregivers. These aims will be accomplished through a longitudinal cohort study enrolling dyads of individuals with DLB of at least moderate dementia severity and their caregivers. Dyads will attend study visits every 6 months through the end of life or 3 years. Based on published clinical series, over half of enrolled individuals with DLB are expected to die over the course of the study. To achieve diverse recruitment, the study includes an in-person cohort where dyads are recruited from Lewy Body Dementia Association Research Centers of Excellence and a novel virtual cohort where dyads are recruited through the Lewy Body Dementia Association and study visits are conducted by telephone. Having a virtual cohort will capture the experiences of individuals with DLB and caregivers not receiving care at specialty centers. Because the majority of study measures are caregiver-reported, the in-person and virtual groups have identical study measures, except for the Unified Parkinson Disease Rating Scale, completed only in person. Collected measures will include demographics, DLB characteristics (e.g. cognitive, motor, behavioral, sleep, and autonomic symptoms), health care providers and settings, caregiver considerations (e.g. resilience, support, grief, burden), quality of life (for the patient and caregiver), and satisfaction with end of life experiences. The caregiver will complete a final study visit 3 months after the death of the person with DLB to assess grief, recovery, and quality of the end of life experience. By following dyads through the end of life and death of the person with DLB and the initial bereavement period for the caregiver, the study will identify DLB-specific predictors of the last 6 months of life, changes in caregiver measures that identify the last 6 months of life, and factors which influence quality end of life experiences. These results will inform the content and timing of end- of-life counseling in DLB, help establish quality metrics for end of life care, and identify areas where interventions could potentially improve end of life experiences for individuals with DLB and their caregivers.

家长R01项目摘要/摘要 Lewy Bodies（DLB）是Lewy身体痴呆的一部分，是第二大的痴呆症的一部分 美国痴呆症也是阿尔茨海默氏病有关的痴呆症（ADRDS）之一。循证 对ADRD的临终护理模型不足；家庭面临艰难的医疗决定，很少 指导的信息。这与DLB特别相关，> 70％的人死于痴呆症 本身或未能成长。看护者描述了缺乏对生命末期期望的知识 负终年经历的重要驱动力。拟议的研究解决了这种未满足的需求。也是如此 针对国家老龄化研究所的优先考虑，以提高患有患者的护理质量和生活质量 在生命的尽头及其照顾者。这项研究的目的是（1）确定6之内死亡的预测因素 DLB患者的月份，（2）确定护理人员措施的改变是否可以预测接近 患有DLB的个人的生命终结，（3）确定影响人们质量终结体验的因素 与DLB及其护理人员。这些目标将通过纵向队列研究来实现 DLB至少中度痴呆症的严重程度及其护理人员的二元组。二元组将参加 研究每6个月访问，直到生命结束或三年。根据已发表的临床系列，超过一半 在研究过程中，患有DLB的招生人员有望死亡。为了实现潜水员的招聘， 该研究包括一个面对面的队列，该队列是从路易人身体痴呆协会招募的二元组 卓越研究中心和一个新颖的虚拟队列 痴呆症协会和学习访问是通过电话进行的。拥有虚拟队列将捕获 患有DLB和看护人的人的经历未在专业中心接受护理。因为 大多数研究措施都是护理人员报告的，面对面和虚拟小组的研究相同 措施，除了统一的帕金森氏病评级量表外，仅亲自完成。集 措施将包括人口统计学，DLB特征（例如认知，运动，行为，睡眠和 自主症状），医疗保健提供者和环境，照顾者的注意事项（例如，弹性，支持， 悲伤，伯恩（Burnen），生活质量（对患者和照料者）以及对生命终结经历的满意度。这 Caregiver将在DLB患者去世后3个月完成最终研究，以评估贪婪， 恢复和生命终结体验的质量。通过在生与死的末期遵循二元组 DLB患者和护理人员的最初丧亲期，该研究将确定DLB特定的 预测生命的最后6个月，照顾者措施的变化确定了生命的最后6个月， 影响质量终结体验的因素。这些结果将告知最终的内容和时间 - 在DLB中的生活咨询，帮助建立质量指标以终止生命护理，并确定领域 干预措施可能会改善DLB及其护理人员的人的终身经历。