Reaching the Most Vulnerable: A Novel Model of Care in Advanced Parkinson's Disease

帮助最弱势群体：晚期帕金森病的新型护理模式

• 批准号: 9975949
• 负责人: Jori Erin Fleisher
• 金额: $ 18.44万
• 依托单位: RUSH UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-25 至 2022-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9975949
• 关键词: Address; Alzheimer' s Disease; Anxiety; Belief; Caregiver research; Caregiver support; Caregivers; Caring; Chronic; Clinical Investigator; Clinical Research; Clinical Services; Comparative Effectiveness Research; Cost effectiveness research; Data; Deterioration; Disabled Persons; Disease; Elderly; Enrollment; Ensure; Fellowship; Five-Year Plans; Foundations; Future; Geriatrics; Goals; Health; Health Care Costs; Health Services Accessibility; Health Services Research; Healthcare; Home environment; Home visitation; Hospitals; Improve Access; Individual; Institution; Institutionalization; Intervention; Master of Science; Measures; Mental Depression; Mentorship; Modeling; Morbidity - disease rate; Movement Disorders; National Institute of Neurological Disorders and Stroke; Nerve Degeneration; Neurologic; Neurology; New York; Outcome; Palliative Care; Parkinson Disease; Patient-Focused Outcomes; Patients; Pennsylvania; Pharmaceutical Preparations; Population; Prospective Studies; Quality of Care; Quality of life; Questionnaires; Randomized; Reporting; Research; Research Personnel; Science; Severities; Source; Structure; Testing; Training; Treatment Efficacy; Universities; Ursidae Family; Visit; aging in place; barrier to care; base; budget impact; career; career development; caregiver strain; clinical epidemiology; cohort; comparative cost effectiveness; cost; cost effectiveness; design; disability; disabling symptom; effective therapy; efficacy testing; experience; follow-up; health care service utilization; health literacy; improved; improved outcome; in-home care; indexing; longitudinal database; medical schools; meetings; mortality; nervous system disorder; novel; patient home care; patient oriented research; peer coaching; population health; professor; program costs; programs; research and development; self-directed learning; skills; telehealth; training opportunity; treatment as usual

PROJECT SUMMARY/ABSTRACT As Parkinson's Disease (PD) progresses, the symptoms of this debilitating and costly condition increase in number and severity, quality of life declines, and caregiver strain rises, resulting in 100-200,000 US patients becoming homebound. This population loses access to care despite overwhelming need. Evidence supports interdisciplinary and home-based models of care in other elderly cohorts, and the use of telehealth in earlier stages of PD; however, none of these have been formally tested in advanced PD. The long-term goals of this K23 are 1) to develop the candidate into a leader in the fields of movement disorders and health services research, and 2) to develop, test, and disseminate models of care and related interventions to improve access to care, quality of care, and quality of life for patients with advanced PD and their caregivers. The aims of this project are 1) to test the efficacy of an interdisciplinary home visit program for patients with advanced PD on patient quality of life and caregiver strain when compared with usual care; 2) to compare the effects of home visits with and without caregiver peer mentoring on caregiver health; and 3) to conduct a budget impact analysis of the model. We will prospectively study 60 patient-caregiver pairs matched with subjects receiving usual care within the National Parkinson Foundation Parkinson's Outcome Project (POP); we will enroll 36 experienced past caregivers as peer mentors. The K23 candidate is an Assistant Professor of Neurology and Population Health at New York University School of Medicine, and completed a movement disorders fellowship and NINDS T32-supported Master's of Science in Clinical Epidemiology at the University of Pennsylvania. She has conducted clinical and health services research in geriatrics, neurology, and PD, identifying health literacy and medication beliefs as barriers to care. She has demonstrated the feasibility of a pilot interdisciplinary home visit program for homebound individuals with PD. The candidate is committed to a career in patient-oriented research and proposes an comprehensive five-year plan of mentorship, formal training, self-directed learning, and research. She will develop expertise and skills in: 1) Implementation and dissemination science; 2) Comparative and cost effectiveness research; and 3) Palliative care skills and research. The results of this K23 will inform future R01 applications that will test the efficacy and cost effectiveness of this model for advanced PD in other settings, and adapt this model to other chronic neurologic conditions. By identifying, testing, and disseminating effective therapies and models of care for this previously understudied population, we can minimize morbidity and unnecessary healthcare utilization. Dr. Fleisher's mentorship team includes expertise in PD, implementation and dissemination of interdisciplinary care models, telehealth, cost effectiveness, and the POP. The outstanding institutional support, and proposed training, career development, and research plans will ensure Dr. Fleisher's successful transition to an independent clinical investigator dedicated to improving the health outcomes of patients with advanced Parkinson's Disease and other neurodegenerative conditions.

项目摘要/摘要 随着帕金森病(PD)的发展，这种令人虚弱和代价高昂的疾病的症状会增加 数量和严重程度，生活质量下降，照顾者压力增加，导致100-20万美国患者 要回家了。尽管有巨大的需求，但这些人口失去了获得护理的机会。证据支持 其他老年人队列中的跨学科和以家庭为基础的护理模式，以及早期远程保健的使用 帕金森病的各个阶段；然而，这些都没有在晚期帕金森病中进行过正式测试。这样做的长期目标是 K23是1)将候选人培养成运动障碍和健康服务领域的领导者 研究；以及2)开发、测试和传播护理模式和相关干预措施，以改善获得机会 为晚期帕金森病患者及其照顾者提供护理、护理质量和生活质量。这样做的目的是 项目有1)测试跨学科家访计划对晚期帕金森病患者的疗效 与常规护理相比，患者的生活质量和照顾者的压力；2)比较家庭护理的效果 在照顾者健康方面有或没有照顾者同行指导的情况下进行访问；3)进行预算影响 对模型进行了分析。我们将前瞻性地研究60对与受试者匹配的患者-照顾者 国家帕金森基金会帕金森结局项目(POP)中的常规护理；我们将招募36人 有经验的过去的照顾者作为同伴导师。K23候选人是神经学助理教授和 纽约大学医学院的人口健康，并完成了运动障碍奖学金 和NINDS T32支持的宾夕法尼亚大学临床流行病学理学硕士学位。她 在老年病学、神经病学和帕金森病方面进行了临床和健康服务研究，确定了健康素养 以及药物信仰作为护理的障碍。她已经证明了试点跨学科之家的可行性。 为患有帕金森病的居家个人提供访问计划。应聘者致力于以病人为本的职业生涯 研究并提出了一个全面的五年计划，包括指导、正规培训、自我指导学习、 和研究。她将在以下方面发展专门知识和技能：1)实施和传播科学；2) 比较和成本效益研究；以及3)姑息治疗技能和研究。这个K23的结果 将通知未来的R01应用程序，这些应用程序将测试此模型对高级 帕金森病在其他环境中，并使这一模型适应其他慢性神经系统疾病。通过识别、测试和 为这一以前研究不足的人群传播有效的治疗和护理模式，我们可以 将发病率和不必要的医疗保健使用率降至最低。Fleisher博士的指导团队包括以下专业知识 PD、跨学科护理模式的实施和传播、远程保健、成本效益以及 波普。突出的机构支助，以及拟议的培训、职业发展和研究计划将 确保Fleisher博士成功过渡到致力于改善 晚期帕金森氏病和其他神经退行性疾病患者的健康结局。