More than a Movement Disorder: Applying Palliative Care to Parkinson's Disease

项目摘要/摘要：帕金森病(PD)是第二常见的神经退行性疾病 影响了大约150万美国人，是美国第14大死因。帕金森是 传统上被描述为具有特征性运动症状(如震颤)的运动障碍。然而， 最近的研究表明，疼痛、抑郁等非运动症状的影响 痴呆症的死亡率、生活质量(QOL)、养老院安置和照顾者痛苦。关于模型 对于帕金森病的护理，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疗养院 安置比仅仅由初级保健医生提供的护理要好。不幸的是，也有重要证据表明 许多对帕金森病患者及其照顾者最重要的需求(例如，抑郁、规划未来) 在目前的护理模式下解决得很差。姑息治疗是一种照顾患有疾病的患者的方法 威胁生命的疾病，重点是解决潜在的痛苦原因，包括身体和 精神症状、心理社会问题和精神需求。虽然是为癌症患者开发的姑息性药物 护理方法已经成功地应用于包括心力衰竭在内的其他慢性进行性疾病 和肺部疾病。到目前为止，将这些原则应用于帕金森病的尝试很少，尽管 有证据表明，在目前的护理模式下，PD患者未得到满足的需求可能适合姑息治疗 关心。为数不多但不断增长的中心为帕金森病患者提供门诊姑息治疗，并提供早期有效证据 一项以学术为基础的门诊姑息治疗的随机试验正在由调查人员牵头进行 求婚。虽然这项工作对于推进这一领域至关重要，但还需要进一步的工作来提供一种能够 被广泛传播。目前的提案通过评估有效性和可行性来解决这一差距。 一种新的以社区为基础的干预措施，使社区神经学实践能够改善对 通过姑息治疗培训、辅导和远程医疗资源帮助帕金森病患者和照顾者。我们 假设这项干预将改善患者的生活质量和照顾者的负担，并将被证明是可行的和 社区提供商可以接受。我们的具体目标是：1)确定a)有效性和b) 一种新的以社区为基础的门诊姑息干预治疗帕金森病的可行性；2)描述 A对患者和护理者成本和服务利用的干预；以及3)找出机会 通过以下方式优化基于社区的姑息治疗：a)描述患者和照顾者 与干预利益相关的特征；以及b)通过直接患者、照顾者和提供者 采访。我们方法的创新包括一种新的模式，提供基于社区的特定疾病 姑息治疗不依赖有限的姑息治疗专家资源，阶梯式楔形试验设计和使用 提供多学科护理的远程医疗资源。这项研究意义重大，因为它将创造一种 为今后以社区为基础的帕金森病传播研究和更广泛的姑息治疗领域奠定基础。

Project Summary/Abstract: Parkinson's disease (PD) is the second most common neurodegenerative illness affecting approximately 1.5 million Americans and is the 14th leading cause of death in the United States. PD is traditionally described as a movement disorder with characteristic motor symptoms (e.g. tremor). However, more recent research demonstrates the impact of nonmotor symptoms such as pain, depression, and dementia on mortality, quality of life (QOL), nursing home placement and caregiver distress. Regarding models of care for PD, 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 PD patients and their caregivers (e.g. depression, planning for the future) are poorly addressed under current models of care. Palliative care is an approach to caring for individuals with life-threatening illnesses that focuses on addressing potential causes of suffering including physical and psychiatric symptoms, psychosocial issues and spiritual needs. While developed for cancer patients, palliative care approaches have been successfully applied in other chronic progressive illnesses including heart failure and pulmonary disease. To date there have been minimal attempts to apply these principles to PD although evidence suggests that PD patients' unmet needs under current models of care may be amenable to palliative care. A small but growing cadre of centers offer outpatient palliative care for PD with early evidence of efficacy and a randomized trial of an academic-based outpatient palliative care is underway led by investigators on this proposal. While this work is critical to forwarding this field, further work is needed to provide a model that can be widely disseminated. The current proposal addresses this gap by assessing the effectiveness and feasibility of a novel community-based intervention that empowers community neurology practices to improve care for PD patients and caregivers through palliative care training, coaching and telemedicine resources. We hypothesize that this intervention will improve patient QOL and caregiver burden and will prove feasible and acceptable to community providers. Our Specific Aims are to: 1) Determine the a) effectiveness and b) feasibility of a novel community-based outpatient palliative care intervention for PD.; 2) Describe the effects of a this intervention on patient and caregiver costs and service utilization; and 3) Identify opportunities to optimize community-based palliative care for this population 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 a novel model of providing disease-specific community-based palliative care not dependent on limited palliative specialist resources, a stepped-wedge trial design and use of telemedicine resources to provide multidisciplinary care. The research is significant because it will create a foundation for future community-based dissemination studies in PD and the broader field of palliative care.