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: 10522213
• 负责人: Melissa Jo Armstrong
• 金额: $ 2.71万
• 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 2022-08-05
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10522213
• 关键词: Address; Affect; Age; Alzheimer' s Disease; Alzheimer' s disease related dementia; Area; Behavioral; Behavioral Symptoms; Bereavement; Caregiver Burden; Caregiver well-being; Caregivers; Caring; Centers of Research Excellence; Cessation of life; Characteristics; Child; Climacteric; Clinical; Cognitive; Cohort Studies; Collaborations; Counseling; Data; Data Set; Databases; Dementia; Dementia with Lewy Bodies; Demographic Impact; Discipline of Nursing; Enrollment; Face; Failure to Thrive; Family; Future; Grief reaction; Guidelines; Hallucinations; Health Personnel; Healthcare; Home; Individual; Intervention; Knowledge; Lewy Body Dementia; Life; Life Experience; Location; Longitudinal cohort study; Measures; Medical; Medicare; Mental Depression; Modeling; Motor; Movement Disorder Society Unified Parkinson' s Disease Rating Scale; National Institute on Aging; Outcome; Patients; Persons; Physicians; Pneumonia; Population; Predictive Factor; Provider; Publishing; Quality of Care; Quality of life; Recovery; Reporting; Rural; Self Efficacy; Series; Severities; Signal Transduction; Sleep; Social support; Specialist; Spouses; Symptoms; Telephone; United States; Visit; base; cohort; comorbidity; coping; decubitus ulcer; demographics; end of life; end of life care; evidence base; experience; hospice environment; improved; informal caregiver; medical specialties; neurodegenerative dementia; novel; recruit; residence; resilience; satisfaction; suburb; tool; virtual

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.

项目概要/摘要 路易体痴呆 (DLB) 是路易体痴呆的一部分，路易体痴呆是第二常见的退行性痴呆 在美国，痴呆症也是阿尔茨海默病相关痴呆症（ADRD）的一种。循证 针对 ADRD 的临终关怀模式尚不充分；家庭面临着艰难的医疗决定，几乎没有什么 信息以供指导。这对于 DLB 尤为重要，其中超过 70% 的人死于痴呆症 本身或未能蓬勃发展。护理人员称，他们缺乏对临终时会发生什么的了解 负面临终经历的重要驱动因素。拟议的研究解决了这一未满足的需求。它还 解决了国家老龄化研究所的优先事项，即提高患有老年痴呆症的人的护理质量和生活质量 临终 ADRD 患者及其护理人员。本研究的目的是 (1) 确定 6 年内死亡的预测因素 DLB 患者的几个月，(2) 确定护理人员措施的变化是否可以预测接近 DLB 患者的临终经历，以及 (3) 确定影响患者临终体验质量的因素 与 DLB 及其照顾者一起。这些目标将通过一项纵向队列研究来实现 至少是中度痴呆严重程度的 DLB 患者及其照顾者的二人组。两人将参加 每 6 个月进行一次研究访问，直至生命结束或 3 年。根据已发表的临床系列，超过一半 预计参加的 DLB 患者会在研究过程中死亡。实现多元化招聘， 该研究包括一个现场队列，从路易体痴呆协会招募二人组 卓越研究中心和一个新颖的虚拟队列，通过路易体招募二人组 痴呆症协会和研究访问通过电话进行。拥有一个虚拟队列将捕获 DLB 患者和未在专科中心接受护理的护理人员的经历。因为 大多数研究指标是由护理人员报告的，现场小组和虚拟小组的研究相同 除统一帕金森病评定量表外，其他措施均只能亲自完成。集 衡量标准将包括人口统计数据、DLB 特征（例如认知、运动、行为、睡眠和 自主神经症状）、医疗保健提供者和环境、护理人员的考虑因素（例如恢复力、支持、 悲伤、负担）、生活质量（患者和护理人员）以及对临终经历的满意度。这 护理人员将在 DLB 患者死亡后 3 个月完成最后一次研究访视，以评估悲伤情况， 康复和临终体验的质量。通过跟随二人组经历生与死的终结 患有 DLB 的人和照顾者的最初丧亲期，该研究将确定 DLB 特异性 生命最后 6 个月的预测因素、确定生命最后 6 个月的护理人员措施的变化，以及 影响临终体验质量的因素。这些结果将告知最终的内容和时间 DLB 的临终咨询，帮助建立临终关怀的质量指标，并确定需要哪些领域 干预措施可能会改善 DLB 患者及其护理人员的临终体验。