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

不仅仅是运动障碍：对帕金森病和路易体痴呆症进行姑息治疗

基本信息

批准号：
10657697
负责人：
BENZI M KLUGER
金额：
$ 61.17万
依托单位：
UNIVERSITY OF ROCHESTER
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 2026-06-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10657697
关键词：
Address Adoption Adult Advance Care Planning Affect American Cancer Patient Caregiver Burden Caregivers Caring Cause of Death Characteristics Chronic Chronic Disease Clinical Communities Community Healthcare Data Databases Dementia Disease Disease model Distress E-learning Education Effectiveness Family Family Caregiver Fatigue Foundations Funding Future Grant Health Health Care Costs Health Personnel Healthcare High Prevalence Hospitalization Individual Intervention Interview Job Satisfaction Learning Letters Lewy Body Dementia Life Linear Regressions Maintenance Malignant Neoplasms Medical Mental Depression Modeling Moods Movement Disorders Neurodegenerative Disorders Neurologist Neurology Nursing Homes Outpatients Pain Palliative Care Parents Parkinson Disease Participant Patient Care Patient Self-Report Patient-Focused Outcomes Patients Pattern Personal Satisfaction Persons Physicians Policy Maker Population Pragmatic clinical trial Primary Care Physician Progress Reports Progressive Disease Provider Psychosocial Assessment and Care Psychosocial Influences Quality of life Reach, Effectiveness, Adoption, Implementation, and Maintenance Research Resources Services Site Social Work Social support Spirituality Symptoms System Teleconferences Testing Time Transportation of Patients Tremor United States Work accountable care organization burnout care providers career combat comparative effectiveness trial cost disability effectiveness evaluation end of life care ethnic disparity family support health care service utilization health service use human old age (65+)improved innovation interest learning community medical specialties meetings member mortality motor symptom non-motor symptom novel online community online resource palliative patient mobility peer physical symptom primary outcome racial disparity randomized trial randomized, clinical trials satisfaction secondary analysis secondary outcome social disparities societal costs telehealth treatment as usual treatment effect

项目摘要

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.

项目摘要/摘要：帕金森病 (PD)、路易体痴呆 (LBD) 和相关疾病是影响超过 150 万美国人的第二常见神经退行性疾病，是第 14 位主要神经退行性疾病美国的死因。值得注意的是，虽然帕金森病传统上用运动症状（例如震颤）来描述，最近的研究表明，疼痛、抑郁和痴呆等非运动症状与死亡、生活质量 (QOL)、疗养院安置和护理人员困扰的主要原因。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患者和家庭最重要的需求（例如疼痛、计划未来）在当前的护理模式下没有得到很好的解决。姑息治疗是一种照顾个人的方法患有严重疾病，可解决造成痛苦的多种原因，包括医疗症状、心理社会问题和精神需求。虽然姑息治疗方法是为癌症患者开发的，但已成功适用于其他慢性进行性疾病。人们越来越有兴趣将这些原则应用于 PD 和小黑裙。一个规模虽小但不断壮大的中心骨干现在为 PD 和 LBD 提供门诊姑息治疗，并且越来越多疗效证据，包括由 PI 领导的基于学术的门诊姑息治疗的随机试验。尽管这项工作对于推动这一领域至关重要，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。当前提案地址这一差距，并以我们最初的 R01 赠款的经验教训为基础，评估了一项计划的有效性和可行性新颖的基于社区的干预措施，围绕社区姑息治疗建立在线学习社区神经病学实践并加强对社会支持社区周围患者和家人的护理。我们假设这种干预措施将改善患者的生活质量、护理人员的负担和社区提供者的职业生涯满意。我们的具体目标是： 1) 确定新型社区的 a) 有效性和 b) 可行性 - 基于PD和LBD的门诊姑息治疗模式； 2) 描述该模型对患者和患者的影响护理人员费用和医疗保健利用率； 3) 通过以下方式确定优化该模型的机会： a) 描述与干预益处相关的患者和护理人员特征； b) 通过直接患者，护理人员和提供者访谈。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，并利用在线网络提供基于团队的对患者和家人的支持和同伴联系。这项研究意义重大，因为它测试了潜在的为受 PD 和 LBD 影响的人提供姑息治疗的更高效和有效的模式，以及与我们小组开展的其他工作相结合，将提供与患者、医疗保健提供者相关的数据，政策制定者和其他利益相关者指导该领域未来的传播工作。