权益分类	功能权益	普通用户	{{item.name}}会员
{{category.name}}	{{benefitItem.name}}

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