Multi-Stakeholder Engagement for Interdisciplinary Telehealth in Lewy Body Dementia

多方利益相关者参与路易体痴呆症的跨学科远程医疗

• 批准号: 10283422
• 负责人: Bhavana Patel
• 金额: $ 18.14万
• 依托单位: UNIVERSITY OF FLORIDA
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-30 至 2026-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10283422
• 关键词: Address; Affect; Alzheimer' s disease related dementia; American; Appointment; Area; Caregiver Burden; Caregivers; Caring; Clinic; Clinical Research; Clinical Trials; Clinical Trials Design; Cognitive; Communication; Country; Data; Data Analyses; Dementia; Dementia caregivers; Dementia with Lewy Bodies; Dependence; Disease; Dissemination and Implementation; Elderly; Elements; Family; Florida; Frequencies; Future; Galaxy; Goals; Grant; Health; Health Personnel; Home; Impaired cognition; Impairment; Improve Access; Individual; Institutes; Intervention; Interview; K-Series Research Career Programs; Lewy Body Dementia; Life; Life Style; Location; Measurement; Measures; Melissa; Mentors; Modeling; Movement; Nature; Nerve Degeneration; Nutritional; Outcome; Outcome Measure; Parkinsonian Disorders; Patient Care; Patient Self-Report; Patient-Focused Outcomes; Patients; Persons; Pharmacology; Population; Pragmatic clinical trial; Preparation; Professional Organizations; Qualitative Research; Quality of Care; Quality of life; Questionnaires; Randomized; Randomized Controlled Clinical Trials; Rehabilitation therapy; Reporting; Research; Research Methodology; Research Personnel; Resources; Risk Factors; Role; Schedule; Science; Services; Social Workers; Social isolation; Social support; Specialist; Supervision; System; Telemedicine; Testing; Training; Travel; United States; Universities; Visit; advocacy organizations; base; behavior change; behavioral impairment; care delivery; career; dementia care; design; experience; falls; implementation outcomes; implementation science; improved; medical specialist; medical specialties; modifiable risk; mortality; nervous system disorder; neurodegenerative dementia; patient-level barriers; pilot trial; rural residence; satisfaction; secondary analysis; skills; social; telehealth; treatment as usual; usability; usual care arm; virtual; virtual delivery; virtual model; virtual platform; wearable device; wearable sensor technology

Project Summary/Abstract Lewy body dementia (LBD) is the second most common neurodegenerative dementia in the United States and one of the Alzheimer’s disease-related dementias (ADRDs). It affects 1.4 million Americans and their caregivers. Individuals with LBD are affected by both physical and cognitive impairments, and eventually require continuous supervision leading to high caregiver burden. A patient-centric specialized interdisciplinary care model, the Neuromedicine Service and Science Hub model, addresses physical, cognitive, nutritional, social support, and caregiver needs. However, this model of care is not easily accessible or offered across the country. The overarching goal of my proposal is to improve patient and caregiver health outcomes by increasing access to specialty care for individuals with LBD and their caregivers. The objective of the proposed study is to convert this in-person patient-centric interdisciplinary care model to a virtual platform using stakeholder engagement (Aim 1). After adapting the care model to virtual delivery, I will conduct a pilot randomized, controlled clinical trial including 30 individuals with LBD and their caregivers for 6 months to determine the feasibility, acceptability, and appropriateness of this intervention, as well as to obtain pilot outcome data (Aim 2). Additionally, the study will pilot the usability of a wearable sensor to objectively assess patient outcomes, including life space mobility (Aim 3). Life space mobility, a measure of the area in which someone moves through, closely correlates with quality of life, falls, and mortality. My research goal is to establish and iteratively improve a virtual interdisciplinary model of care allowing patients with LBD and their caregivers to access sub-specialty care from their home. Through this K23, I have organized an interdisciplinary mentoring committee and training plan to develop expertise in pragmatic clinical trial design, dissemination and implementation science, qualitative research methods, data analysis, and research conduct. The mentoring team consists of world-renowned experts in interdisciplinary models of care in neurodegenerative conditions (Michael Okun, Benzi Kluger), stakeholder engagement and qualitative research in LBD (Melissa Armstrong, James Galvin), dissemination and implementation science (Stephanie Staras) and wearable technology (Todd Manini). This research will be conducted at the Fixel Institute for Neurological Diseases at the University of Florida, which has the integrated telemedicine capabilities, interdisciplinary care framework, and clinical/research resources to conduct this study. The expertise and skills gained by this 5 year career development award will help accomplish my long-term career goal to become an independent investigator researching effective care delivery to individuals with LBD and their caregivers.

项目总结/摘要 路易体痴呆症（LBD）是美国第二常见的神经退行性痴呆症， 阿尔茨海默病相关痴呆症（ADRD）之一。它影响了140万美国人及其 照顾者患有LBD的人受到身体和认知障碍的影响，最终 需要持续监督，导致护理人员负担沉重。以患者为中心的专业跨学科 护理模式，神经医学服务和科学中心模式，解决身体，认知，营养， 社会支持和照顾者需求。然而，这种护理模式并不容易在整个国家获得或提供。 国家我的提案的总体目标是通过以下方式改善患者和护理人员的健康状况： 增加LBD患者及其护理人员获得专业护理的机会。建议的目标 研究是将这种以患者为中心的跨学科护理模式转换为虚拟平台， 利益攸关方参与（目标1）。在使护理模式适应虚拟分娩后， 随机对照临床试验，包括30名LBD患者及其护理人员，为期6个月， 确定这种干预的可行性、可接受性和适当性，并获得试点 结果数据（目标2）。此外，该研究将试点可穿戴传感器的可用性，以客观地评估 患者结局，包括生活空间移动性（目标3）。生活空间流动性，衡量生活空间的区域 与生活质量、福尔斯和死亡率密切相关。我的研究目标是 建立并迭代改进虚拟跨学科护理模型， 护理人员从家中获得专科护理。通过这个K23，我组织了一个 跨学科指导委员会和培训计划，以发展实用临床试验设计方面的专业知识， 传播和实施科学，定性研究方法，数据分析和研究行为。 指导团队由世界知名的跨学科护理模式专家组成， 神经退行性疾病（Michael Okun，Benzi Kluger），利益相关者参与和定性研究 在LBD（Melissa Armstrong，James Galvin），传播和实施科学（Stephanie Staras）和 可穿戴技术（托德马尼尼）。这项研究将在Fixel神经病学研究所进行。 疾病在佛罗里达大学，它具有综合远程医疗能力，跨学科护理 框架和临床/研究资源进行这项研究。这5年来获得的专业知识和技能 职业发展奖将有助于实现我的长期职业目标，成为一个独立的 研究人员研究对LBD患者及其护理人员的有效护理。