More than a Movement Disorder: Applying Palliative Care to Parkinson's Disease and Lewy Body Dementias

项目摘要/摘要：帕金森氏病(PD)、路易体痴呆(LBD)及相关疾病包括 影响超过150万美国人的第二种最常见的神经退行性疾病，排名第14位 在美国的死因。值得注意的是，虽然帕金森病传统上是通过运动症状(例如震颤)来描述的， 最近的研究表明，疼痛、抑郁和痴呆症等非运动症状 死亡率、生活质量(QOL)、养老院安置和照顾者痛苦的主要原因。关于 PD和LBD的护理模式，有证据表明，包括神经科医生在内的护理可以降低死亡率 和养老院安置，而不是仅仅由初级保健医生护理。不幸的是，还有 重要证据表明，许多对患者和家人最重要的需求(例如，疼痛、计划 未来)在目前的护理模式下解决得很差。姑息治疗是一种照顾个体的方法。 患有多种引起痛苦的原因的严重疾病，包括医学症状、心理社会问题 和精神需求。虽然是为癌症患者开发的，但姑息治疗方法已经成功 适用于其他慢性进展性疾病。人们越来越有兴趣将这些原则应用于PD和 LBD。一小部分但不断增长的中心现在为PD和LBD提供门诊姑息治疗，而且越来越多 疗效的证据包括由PI领导的以学术为基础的门诊姑息治疗的随机试验。而当 这项工作对推动这一领域的发展至关重要，还需要进一步的工作来提供可以广泛应用的模型 在大多数患者接受护理的社区中传播。目前的提案针对的是 这一差距并建立在我们最初的R01赠款的经验教训基础上，通过评估 基于社区的新型干预措施，围绕社区姑息关怀建立在线学习社区 神经学实践和加强对社会支持社区周围的患者和家人的关怀。我们 假设这项干预将改善患者的生活质量、照顾者的负担和社区提供者的职业生涯 满足感。我们的具体目标是：1)确定a)有效性和b)可行性- 基于PD和LBD的门诊姑息护理模式；2)描述该模式对患者和 护理人员成本和医疗保健利用率；以及3)通过以下方式确定优化此模式的机会：a)描述 与干预益处相关的患者和护理者特征；以及b)通过直接患者， 护理者和提供者面谈。我们方法的创新包括使用在线学习社区 与神经科医生一起实施初级姑息治疗，并使用在线网络提供基于团队的 向患者和家属提供支持和同龄人联系。这项研究意义重大，因为它测试了一种潜在的 为帕金森病和LBD患者提供更有效的姑息治疗模式，并在 与我们小组进行的其他工作一起，将提供与患者、医疗保健提供者、 政策制定者和其他利益攸关方，以指导这一领域今后的传播工作。

Project Summary/Abstract: Parkinson's disease (PD), Lewy Body Dementia (LBD) and related disorders are the second most common neurodegenerative illness affecting over 1.5 million Americans and are the 14th leading cause of death in the United States. Notably, while PD is traditionally described by motor symptoms (e.g. tremor), more recent research demonstrates that nonmotor symptoms such as pain, depression, and dementia are leading causes of mortality, quality of life (QOL), nursing home placement and caregiver distress. Regarding models of care for PD and LBD, evidence suggests that care including a neurologist results in lower mortality and nursing home placement than care solely from a primary care physician. Unfortunately, there is also significant evidence that many of the needs most important to patients and family (e.g. pain, planning for the future) are poorly addressed under current care models. Palliative care is an approach to caring for individuals with serious illness that addresses multiple causes of suffering including medical symptoms, psychosocial issues and spiritual needs. While developed for cancer patients, palliative care approaches have been successfully applied in other chronic progressive illnesses. There is expanding interest in applying these principles to PD and LBD. A small but growing cadre of centers now offer outpatient palliative care for PD and LBD with mounting evidence of efficacy including a randomized trial of academic-based outpatient palliative care led by the PI. While this work is critical to forwarding this field, further work is needed to provide models that can be widely disseminated in the community where the majority of patients receive their care. The current proposal addresses this gap and builds on lessons learned our original R01 grant by assessing the effectiveness and feasibility of a novel community-based intervention that builds online learning communities around palliative care for community neurology practices and augments care for patients and family around social support communities. We hypothesize this intervention will improve patient QOL, caregiver burden and community provider career satisfaction. Our Specific Aims are to: 1) Determine the a) effectiveness and b) feasibility of a novel community- based outpatient palliative care model for PD and LBD; 2) Describe the effects of this model on patient and caregiver costs and healthcare utilization; and 3) Identify opportunities to optimize this model by: a) describing patient and caregiver characteristics associated with intervention benefits; and b) through direct patient, caregiver and provider interviews. Innovations of our approach include the use of online learning communities to implement primary palliative care with neurologists and the use of online networks to provide team-based support and peer connections to patients and families. The research is significant because it tests a potentially more efficient and effective model of providing palliative care to persons affected by PD and LBD, and, in conjunction with other work conducted by our group, will provide data relevant to patients, healthcare providers, policy makers and other stakeholders to guide future dissemination efforts in this field.