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

• 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
• 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

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.

项目概要/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大死亡原因。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，在这方面， 最近的研究表明，非运动症状，如疼痛，抑郁， 痴呆症对死亡率、生活质量（QOL）、疗养院安置和照顾者痛苦的影响。关于模型 有证据表明，包括神经科医生在内的护理可降低死亡率， 而不是仅仅从初级保健医生那里得到护理。不幸的是，也有重要证据表明， 对PD患者及其护理人员最重要的许多需求（例如抑郁、规划未来） 在目前的护理模式下，这些问题得不到很好的解决。姑息治疗是一种照顾患有 危及生命的疾病，重点是解决痛苦的潜在原因，包括身体和 精神症状、社会心理问题和精神需求。虽然是为癌症患者开发的， 护理方法已成功应用于其他慢性进展性疾病，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， 有证据表明，PD患者在当前护理模式下未满足的需求可能适合姑息治疗， 在乎一个规模虽小但不断壮大的中心为PD提供门诊姑息治疗，并有早期疗效证据 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进这一领域至关重要，但还需要进一步的工作来提供一个模型， 广泛传播。目前的建议通过评估有效性和可行性来弥补这一差距。 一种新的基于社区的干预，使社区神经病学的做法，以改善护理 通过姑息治疗培训、指导和远程医疗资源，帮助PD患者和护理人员。我们 假设该干预措施将改善患者QOL和护理人员负担，并将证明是可行的， 社区供应商可以接受。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PD门诊姑息治疗干预的可行性。2)描述的影响 a）对患者和护理人员的成本和服务利用进行干预;以及3）确定机会， 通过以下方式优化这一人群的社区姑息治疗：a）描述患者和护理人员 与干预益处相关的特征;以及B）通过直接患者、护理者和提供者 采访我们方法的创新包括一种新的模式， 姑息治疗不依赖于有限的姑息治疗专家资源，一个阶梯楔形试验设计和使用 远程医疗资源，以提供多学科护理。这项研究意义重大，因为它将创造一个 为未来PD和更广泛的姑息治疗领域的社区传播研究奠定了基础。