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

• 批准号: 10298020
• 负责人: BENZI M KLUGER
• 金额: $ 67.79万
• 依托单位: UNIVERSITY OF ROCHESTER
• 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 2026-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10298020
• 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; Data; Databases; Dementia; Dementia with Lewy Bodies; 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; 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; Randomized Clinical Trials; Reach, Effectiveness, Adoption, Implementation, and Maintenance; Research; Resources; Services; Site; Social Work; Social support; Symptoms; System; Teleconferences; Testing; Transportation of Patients; Tremor; United States; Work; base; burnout; 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; satisfaction; secondary analysis; secondary outcome; social disparities; societal costs; telehealth; time use; treatment as usual; treatment effect

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），路易体痴呆症（LBD）和相关疾病是 第二大最常见的神经退行性疾病，影响超过150万美国人，是第14大 美国的死因。值得注意的是，虽然PD传统上通过运动症状（例如震颤）来描述， 最近的研究表明，非运动症状，如疼痛，抑郁和痴呆， 死亡率、生活质量（QOL）、疗养院安置和护理人员痛苦的主要原因。关于 PD和LBD的护理模式，证据表明，包括神经科医生在内的护理导致死亡率降低 和养老院安置比照顾单独从初级保健医生。不幸的是， 有显著证据表明，许多对患者和家庭最重要的需求（例如疼痛、 未来）在目前的护理模式下解决得很差。姑息治疗是一种照顾个人的方法 患有严重疾病的患者，可解决多种痛苦原因，包括医学症状、心理社会问题 和精神需求。虽然是为癌症患者开发的，但姑息治疗方法已经成功地应用于癌症患者。 应用于其他慢性进行性疾病。将这些原则应用于PD的兴趣越来越大， LBD。一个小的，但不断增长的中心骨干，现在提供门诊姑息治疗PD和LBD与安装 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。而 这项工作对于推进这一领域至关重要，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传播。目前的提案涉及 这一差距，并建立在经验教训，我们原来的R 01赠款，通过评估的有效性和可行性， 一种新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 神经病学的做法，并加强照顾病人和家庭周围的社会支持社区。我们 假设这种干预将改善患者生活质量、照顾者负担和社区提供者职业 满意我们的具体目标是：1）确定a）有效性和B）可行性的一个新的社区- 基于门诊姑息治疗模式的PD和LBD; 2）描述该模式对患者的影响， 护理人员成本和医疗保健利用率;以及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者特征;以及B）通过直接患者， 照顾者和提供者访谈。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 对患者和家属的支持和同伴联系。这项研究意义重大，因为它测试了一种潜在的 为受PD和LBD影响的人提供姑息治疗的更有效和更有效的模式， 结合我们小组开展的其他工作，将提供与患者，医疗保健提供者， 政策制定者和其他利益攸关方指导这一领域今后的传播工作。