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

不仅仅是运动障碍：对帕金森病进行姑息治疗

基本信息

批准号：
9175308
负责人：
BENZI M KLUGER
金额：
$ 58.32万
依托单位：
UNIVERSITY OF COLORADO DENVER
依托单位国家：
美国
项目类别：
财政年份：
2016
资助国家：
美国
起止时间：
2016-09-15 至 2021-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9175308
关键词：
Acute Address Adoption Adult Advance Care Planning Affect Age American Assessment tool Cancer Patient Caregiver Burden Caregivers Caring Cause of Death Characteristics Chronic Chronic Disease Communities Data Dementia Disease Disease model Distress Effectiveness Elderly Emergency department visit Family Family Caregiver Fatigue Foundations Funding Future Goals Health Health Care Costs Heart failure High Prevalence Hip Fractures Home environment Hospitalization Individual Intervention Interview Life Linear Regressions Lung diseases Maintenance Malignant Neoplasms Mental Depression Methods Modeling Moods Movement Disorders Needs Assessment Neurodegenerative Disorders Neurologist Neurology Nursing Homes Outcome Outcomes Research Outpatients Pain Palliative Care Parkinson Disease Participant Patient-Focused Outcomes Patients Persons Population Pragmatic clinical trial Primary Care Physician Progressive Disease Provider Psychosocial Influences Quality of life Randomized Clinical Trials Research Research Institute Research Personnel Resources Services Site Social Health Services Specialist Surveys Symptoms System Techniques Telemedicine Training Tremor United States Work abstracting base cost design disability dissemination trial empowered health care service utilization high risk improved improved outcome informal caregiver innovation meetings member mortality motor symptom multidisciplinary non-motor symptom novel palliative physical symptom primary outcome psychiatric symptom randomized trial secondary outcome service utilization social time use treatment as usual treatment effect trial design

项目摘要

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.

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约 150 万美国人，是美国第 14 大死因。 PD 是传统上被描述为具有特征性运动症状（例如震颤）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对死亡率、生活质量（QOL）、疗养院安置和护理人员困扰的影响。关于型号关于帕金森病的护理，有证据表明，包括神经科医生在内的护理可降低死亡率和疗养院安置而不是仅由初级保健医生提供护理。不幸的是，还有重要证据表明许多对帕金森病患者及其护理人员最重要的需求（例如抑郁症、未来规划）在当前的护理模式下，这些问题没有得到很好的解决。姑息治疗是一种照顾患有以下疾病的人的方法危及生命的疾病，重点是解决造成痛苦的潜在原因，包括身体和疾病精神症状、心理社会问题和精神需求。虽然是为癌症患者开发的，但姑息治疗护理方法已成功应用于其他慢性进行性疾病，包括心力衰竭和肺部疾病。迄今为止，将这些原则应用于 PD 的尝试很少，尽管有证据表明，帕金森病患者在当前护理模式下未得到满足的需求可能适合姑息治疗关心。少数但不断壮大的中心骨干提供帕金森病门诊姑息治疗，并有早期疗效证据由研究人员领导的一项基于学术的门诊姑息治疗的随机试验正在进行中提议。虽然这项工作对于推动这一领域至关重要，但还需要进一步的工作来提供一个可以得到广泛传播。当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颖的基于社区的干预措施，使社区神经病学实践能够改善对患者的护理通过姑息治疗培训、辅导和远程医疗资源为帕金森病患者和护理人员提供帮助。我们假设这种干预措施将改善患者的生活质量和护理人员的负担，并且被证明是可行的社区提供者可以接受。我们的具体目标是： 1) 确定 a) 有效性和 b) 基于社区的新型帕金森病门诊姑息治疗干预措施的可行性。 2) 描述效果 a 对患者和护理人员成本以及服务利用的干预； 3) 确定机会通过以下方式优化针对该人群的基于社区的姑息治疗： a) 描述患者和护理人员与干预效益相关的特征； b) 通过直接患者、护理人员和提供者采访。我们方法的创新包括提供基于社区的特定疾病的新模式姑息治疗不依赖于有限的姑息专家资源、阶梯楔形试验设计和使用远程医疗资源提供多学科护理。这项研究意义重大，因为它将创建一个为未来帕金森病和更广泛的姑息治疗领域的社区传播研究奠定了基础。