Advancing Palliative Care for Older Adults Affected by Neurodegenerative Disease: Parkinsons disease, Alzheimers disease and Related Dementias

推进对受神经退行性疾病影响的老年人的姑息治疗：帕金森病、阿尔茨海默病和相关痴呆症

• 批准号: 10055394
• 负责人: BENZI M KLUGER
• 金额: $ 14.22万
• 依托单位: UNIVERSITY OF ROCHESTER
• 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 2025-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10055394
• 关键词: Address; Administrative Supplement; Adult; Advance Care Planning; Advanced Development; Affect; Alzheimer' s Disease; Alzheimer' s disease patient; Alzheimer' s disease related dementia; Area; Award; Caregiver support; Caregivers; Caring; Cause of Death; Chronic; Communities; Data; Development; Distress; Education; Effectiveness; Elderly; Family; Fostering; Foundations; Funding; Future; Goals; Grant; Health Care Costs; Health Policy; Home visitation; Individual; Intervention; Interview; Lead; Leadership; Lewy Body Dementia; Life; Malignant Neoplasms; Medical; Mental Depression; Mentors; Modeling; Neurodegenerative Disorders; Neurologic Symptoms; Neurologist; Neurology; Nursing Homes; Outcome; Outpatients; Pain; Pain management; Palliative Care; Parkinson Disease; Patient-Focused Outcomes; Patients; Personality; Physicians; Play; Population; Program Research Project Grants; Psychosocial Influences; Quality of life; Randomized Clinical Trials; Research; Research Personnel; Resources; Role; Services; Site; Specialist; Symptoms; Teleconferences; Testing; Time; Training; Transportation; Transportation of Patients; Universities; Work; aging in place; base; burnout; care systems; career; career development; community setting; comparative effectiveness trial; design; effectiveness testing; efficacy trial; end of life care; experience; health care disparity; health care service utilization; human old age (65+); implementation science; improved; improved outcome; interest; medical specialties; meetings; novel; novel strategies; online community; palliative; patient mobility; physical symptom; preference; programs; psychiatric symptom; psychosocial; randomized trial; satisfaction; stem; telehealth; virtual

Project Summary/Abstract: Neurodegenerative illnesses such as Parkinson’s (PD), Lewy Body Dementia (LBD) and Alzheimer’s disease (AD) affect nearly 15% of adults over age 65 and are leading causes of death in the US. While these illnesses are traditionally defined by their neurologic symptoms, more recent research describes the high impact of other medical symptoms on patients and the immense psychosocial consequences of these illnesses on both patients and families. Unfortunately, multiple lines of evidence demonstrate that many of the needs most important to patients and caregivers (e.g. pain management, advance care planning, end-of-life care) are poorly addressed under current care models. Palliative care is an approach to caring for individuals with life-limiting illness that addresses potential causes of suffering including physical symptoms, psychosocial issues and spiritual needs. To date there have been limited attempts to apply these principles to neurodegenerative illnesses despite evidence that patients’ and caregivers’ unmet needs may be amenable to this approach. Notably, the candidate has played a central role among a growing cadre of academic centers that now offer palliative care services for neurodegenerative illnesses and presents results from a randomized trial of academic-based outpatient palliative care that convincingly demonstrate this approach improves patient and caregiver outcomes over current standards of care. While efficacy trials are critical to forwarding this field, barriers to their dissemination include a limited workforce of palliative care specialists, lack of palliative education amongst neurologists, lack of team-based resources in community settings, and patient mobility/transportation issues. The long-term goal of the candidate is to improve outcomes and raise standards of care for older adults affected by neurodegenerative illnesses through novel, efficient and effective models of delivering palliative care. The Research Aims of this award will be met through: Study 1: Determine the effectiveness and feasibility of individual palliative care training for community neurologists and team-based virtual house calls for PD/LBD patients and caregivers (funded R01); Study 2: Develop a community-based model of palliative care for AD patients and caregivers (funded NIA AD Administrative Supplement; R01 trial to stem from results); Study 3: Determine the effectiveness and feasibility of a novel online community model to support community-based palliative care for PD/LBD (R01 Under Review); and Study 4: Integrate geriatric principles and care into our neuropalliative care model to improve outcomes for patients and caregivers affected by neurodegenerative illness (future P01 grant). As this is an emerging research direction for the candidate, the Career Development Objectives will provide formal training in academic leadership, geriatric palliative care, implementation science, caregiver support, telehealth and healthcare policy. This proposal is significant because it will create a foundation for palliative care dissemination efforts relevant to neurodegenerative illness and the broader field of geriatric palliative care.

项目摘要/摘要：神经退行性疾病，例如帕金森氏（PD），Lewy身体痴呆症 （LBD）和阿尔茨海默氏病（AD）影响了65岁以上的成年人的近15％，并且是死亡的主要原因 在美国。尽管这些疾病传统上是由它们的神经系统符号定义的，但最新的研究 描述了其他医疗符号对患者的高影响以及影响心理社会的影响 这些疾病对患者和家庭的后果。不幸的是，多行证据 证明许多对患者和护理人员最重要的需求（例如，疼痛管理， 在当前的护理模型下，预先护理计划，临终关怀）的解决方案很差。姑息治疗是 照顾有生命疾病的人的方法，以解决痛苦的潜在原因 身体症状，社会心理问题和精神需求。迄今为止，申请的尝试有限 这些原则是神经退行性疾病目的地的证据，表明患者和看护人的需求未满足 可能适合这种方法。值得注意的是，候选人在不断增长的干部中发挥了核心作用 现在为神经退行性疾病提供姑息治疗服务的学术中心并呈现结果 从基于学术的门诊姑息治疗的随机试验中，令人信服地证明了这一点 方法可以改善患者和护理人员在当前的护理标准上的结果。虽然效率试验是 对于转发这一领域至关重要的是，他们传播的障碍包括有限的姑息治疗劳动力 专家，神经科医生缺乏姑息教育，社区中缺乏基于团队的资源 设置以及患者流动/运输问题。候选人的长期目标是改善结果 并通过新颖，有效地提高受神经退行性疾病影响的老年人的护理标准 以及提供姑息治疗的有效模型。该奖项的研究目标将通过：研究来满足： 1：确定针对社区神经科医生的个人姑息治疗培训的有效性和可行性 以及基于团队的虚拟房屋呼吁PD/LBD患者和护理人员（资助R01）；研究2：开发 针对AD患者和护理人员的姑息治疗的基于社区的模型（资助的NIA AD行政管理 补充; R01试验以源于结果）；研究3：确定新颖的有效性和可行性 在线社区模型支持基于社区的PD/LBD的姑息治疗（R01正在审查）；和 研究4：将老年原理和护理整合到我们的神经化护理模型中，以改善结果 受神经退行性疾病影响的患者和护理人员（未来的P01赠款）。因为这是一个新兴 候选人的研究方向，职业发展目标将提供正式培训 学术领导，老年姑息治疗，实施科学，护理人员支持，远程医疗和 医疗保健政策。该提议很重要，因为它将为姑息治疗创造基础 与神经退行性疾病和老年姑息治疗更广泛的领域有关的传播工作。