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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）及其相关疾病