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，如帕金森病 (PD)、路易体痴呆 (LBD) 和阿尔茨海默病 (AD) 影响近 15% 的 65 岁以上成年人，是导致死亡的主要原因 在美国，虽然这些疾病传统上是根据神经系统症状来定义的，但最近的研究表明。 描述了其他医学症状对患者的严重影响以及巨大的心理社会影响 不幸的是，这些疾病对患者和家庭的后果有多种证据。 证明许多对患者和护理人员来说最重要的需求（例如疼痛管理、 临终关怀）在当前的护理模式下没有得到很好的解决。 照顾患有生命有限疾病的个人的方法，解决造成痛苦的潜在原因，包括 迄今为止，针对身体症状、心理社会问题和精神需求的尝试有限。 尽管有证据表明患者和护理人员的需求未得到满足，但神经退行性疾病的这些原则 值得注意的是，候选人在不断壮大的骨干队伍中发挥了核心作用。 现在为神经退行性疾病提供姑息治疗服务并展示结果的学术中心 来自一项基于学术的门诊姑息治疗的随机试验令人信服地证明了这一点 与当前的护理标准相比，该方法改善了患者和护理人员的结果。 对于推进这一领域至关重要，其传播的障碍包括姑息治疗人员有限 专家、神经科医生缺乏姑息教育、社区缺乏基于团队的资源 候选人的长期目标是改善结果。 通过新颖、有效的方法提高受神经退行性疾病影响的老年人的护理标准 提供姑息治疗的有效模式 该奖项的研究目标将通过以下方式实现： 研究。 1：确定社区神经科医生个体姑息治疗培训的有效性和可行性 以及针对 PD/LBD 患者和护理人员的基于团队的虚拟上门服务（资助 R01）； 针对 AD 患者和护理人员的基于社区的姑息治疗模式（由 NIA AD 行政部门资助） 补充；R01试验源于研究3：确定新颖性的有效性和可行性 支持基于社区的 PD/LBD 姑息治疗的在线社区模式（R01 正在审查中）； 研究 4：将老年病学原则和护理融入我们的神经姑息护理模型中，以改善患者的治疗结果 受神经退行性疾病影响的患者和护理人员（未来 P01 补助金），因为这是一项新兴疾病。 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 该提案意义重大，因为它将为姑息治疗奠定基础。 与神经退行性疾病和更广泛的老年姑息治疗领域相关的传播工作。