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

项目摘要/摘要：帕金森氏症(PD)、路易体痴呆等神经退行性疾病 LBD和阿尔茨海默病(AD)影响着近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由其神经系统症状来定义的，但最近的研究 描述了其他医学症状对患者的高度影响和巨大的心理社会 这些疾病给患者和家庭带来的后果。不幸的是，有多条证据 证明许多对患者和护理人员最重要的需求(例如，疼痛管理， 在目前的护理模式下，预先护理规划、临终护理)没有得到很好的解决。姑息治疗是一种 照顾患有限制生命的疾病的个人的方法，以解决潜在的痛苦原因，包括 身体症状、心理社会问题和精神需求。到目前为止，申请的尝试有限。 这些原则适用于神经退行性疾病，尽管有证据表明患者和照顾者的需求没有得到满足 可能会顺从于这种方法。值得注意的是，这位候选人在越来越多的 现在为神经退行性疾病提供姑息治疗服务并公布结果的学术中心 来自一项以学术为基础的门诊姑息治疗的随机试验，令人信服地证明了这一点 与目前的护理标准相比，该方法改善了患者和照顾者的结果。虽然疗效试验是 对推动这一领域的发展至关重要的是，其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，社区缺乏基于团队的资源 设置，以及患者的移动性/运输问题。候选人的长期目标是改善结果 并通过新颖、高效的方式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化姑息治疗培训的有效性和可行性 以及针对PD/LBD患者和照顾者的基于团队的虚拟家庭呼叫(资助R01)；研究2：制定 为AD患者和照顾者提供基于社区的姑息治疗模式(由NIA AD管理资助 补充；R01试验源于结果)；研究3：确定一种新的 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)；以及 研究4：将老年原则和护理整合到我们的神经姑息护理模式中，以改善治疗结果 受神经退行性疾病影响的患者和照顾者(未来P01赠款)。因为这是一个新兴的 为应聘者提供研究方向，职业发展目标将提供正规培训 学术领导力、老年姑息治疗、实施科学、照顾者支持、远程保健和 医疗保健政策。这项提议意义重大，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有关的传播努力。

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.