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: 10226958
• 负责人: Jori Erin Fleisher
• 金额: $ 18.34万
• 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/10226958
• 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; Dissemination and Implementation; Elderly; Enrollment; Ensure; Fellowship; Five-Year Plans; Foundations; Future; Geriatrics; Goals; Health; Health Care Costs; Health Services Accessibility; Health Services Research; Healthcare; Home; 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.

项目概要/摘要 随着帕金森病 (PD) 的进展，这种令人衰弱且代价高昂的疾病的症状会随着时间的推移而增加 数量和严重程度、生活质量下降以及护理人员压力增加，导致 100-200,000 名美国患者 变得宅在家里。尽管需求巨大，但该人群仍无法获得护理。证据支持 其他老年人群体的跨学科和家庭护理模式，以及早期远程医疗的使用 PD 的阶段；然而，这些都没有在高级 PD 中进行过正式测试。本次活动的长期目标 K23 是 1) 将候选人培养成为运动障碍和健康服务领域的领导者 研究，以及 2) 开发、测试和传播护理模型和相关干预措施，以改善可及性 晚期 PD 患者及其护理人员的护理、护理质量和生活质量。本次活动的目的 项目是 1) 测试跨学科家访计划对晚期 PD 患者的有效性 与常规护理相比，患者的生活质量和护理人员的压力； 2）居家效果比较 在有或没有护理人员同行对护理人员健康进行指导的情况下进行探访； 3) 进行预算影响 模型分析。我们将前瞻性地研究 60 对与接受治疗的受试者相匹配的患者-护理人员对 国家帕金森基金会帕金森结果项目 (POP) 内的常规护理；我们将招收36名 经验丰富的过去的护理人员作为同伴导师。 K23 候选人是神经病学助理教授 纽约大学医学院人口健康，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 开展了老年病学、神经病学和帕金森病学方面的临床和健康服务研究，确定了健康素养 和药物信念作为护理的障碍。她证明了试点跨学科之家的可行性 为患有帕金森症的居家人士提供访问计划。候选人致力于以患者为中心的职业生涯 研究并提出一个全面的五年计划，包括指导、正规培训、自主学习、 和研究。她将发展以下方面的专业知识和技能：1）实施和传播科学； 2） 比较和成本效益研究； 3) 姑息治疗技能和研究。这次K23的结果 将为未来的 R01 应用提供信息，这些应用将测试该模型的功效和成本效益，以实现先进的 其他环境中的 PD，并使该模型适应其他慢性神经系统疾病。通过识别、测试和 为这一先前未被充分研究的人群传播有效的疗法和护理模式，我们可以 最大限度地减少发病率和不必要的医疗保健利用。弗莱舍博士的导师团队包括以下领域的专业知识 PD、跨学科护理模式的实施和传播、远程医疗、成本效益以及 流行音乐。出色的机构支持以及拟议的培训、职业发展和研究计划将 确保 Fleisher 博士成功转型为独立临床研究者，致力于改善 晚期帕金森病和其他神经退行性疾病患者的健康结果。

项目成果

Disease severity and quality of life in homebound people with advanced Parkinson disease: A pilot study.

晚期帕金森病居家患者的疾病严重程度和生活质量：一项试点研究。

• 发表时间: 2020-08
• 作者: Fleisher, Jori E;Sweeney, Meghan M;Oyler, Sarah;Meisel, Talia;Friede, Naomi;Di Rocco, Alessandro;Chodosh, Joshua
• 通讯作者: Chodosh, Joshua

Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study.

针对晚期帕金森病居家患者非正式护理人员的同伴指导计划（分享护理）：单中心交叉试点研究方案。

• 发表时间: 2022-05-26
• 影响因子: 1.7
• 作者: Fleisher, Jori E;Akram, Faizan;Lee, Jeanette;Klostermann, Ellen C;Hess, Serena P;Myrick, Erica;Levin, Melissa;Ouyang, Bichun;Wilkinson, Jayne;Hall, Deborah A;Chodosh, Joshua
• 通讯作者: Chodosh, Joshua

The impact and feasibility of a brief, virtual, educational intervention for home healthcare professionals on Parkinson's Disease and Related Disorders: pilot study of I SEE PD Home.

针对家庭医疗保健专业人员对帕金森病及相关疾病进行简短、虚拟的教育干预的影响和可行性：I SEE PD Home 的试点研究。

• 发表时间: 2022-06-28
• 影响因子: 3.6
• 作者: Hess, Serena P;Levin, Melissa;Akram, Faizan;Woo, Katheryn;Andersen, Lauren;Trenkle, Kristie;Brown, Patricia;Ouyang, Bichun;Fleisher, Jori E
• 通讯作者: Fleisher, Jori E

Interdisciplinary palliative care for people with advanced Parkinson's disease: a view from the home.

对晚期帕金森病患者的跨学科姑息治疗：来自家庭的视角。

• 发表时间: 2020-02
• 作者: Fleisher, Jori E;Klostermann, Ellen C;Hess, Serena P;Lee, Jeanette;Myrick, Erica;Chodosh, Joshua
• 通讯作者: Chodosh, Joshua

Recommendations for the Organization of Multidisciplinary Clinical Care Teams in Parkinson's Disease.

关于组织帕金森病多学科临床护理团队的建议。

• 发表时间: 2020
• 作者: Radder, Danique L M;Nonnekes, Jorik;van Nimwegen, Marlies;Eggers, Carsten;Abbruzzese, Giovanni;Alves, Guido;Browner, Nina;Chaudhuri, K Ray;Ebersbach, Georg;Ferreira, Joaquim J;Fleisher, Jori E;Fletcher, Peter;Frazzitta, Giuseppe;Giladi, Nir
• 通讯作者: Giladi, Nir