Multi-Stakeholder Engagement for Interdisciplinary Telehealth in Lewy Body Dementia

项目摘要/摘要 路易体痴呆(LBD)是美国第二常见的神经退行性痴呆， 阿尔茨海默病相关痴呆症(ADRD)之一。它影响着140万美国人和他们的 照顾者。患有LBD的个体同时受到身体和认知障碍的影响，最终 需要持续的监督，导致照顾者负担很大。以患者为中心的专业交叉学科 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获得或提供 国家。我的提案的首要目标是通过以下方式改善患者和照顾者的健康状况 增加LBD患者及其照顾者获得专科护理的机会。建议的目标是 研究是将这种以患者为中心的面对面跨学科护理模式转换为虚拟平台，使用 利益相关者参与(目标1)。在将护理模式调整为虚拟分娩后，我将进行试点 随机对照临床试验，包括30名LBD患者和他们的照顾者，为期6个月 确定此干预措施的可行性、可接受性和适当性，并获得试点 结果数据(目标2)。此外，这项研究还将试行可穿戴传感器的可用性，以客观评估 患者结果，包括生活空间移动性(目标3)。生活空间流动性，衡量的是 有人走过，与生活质量、跌倒和死亡率密切相关。我的研究目标是 建立并反复改进虚拟跨学科护理模式，使LBD患者和他们的 护理者可以在家中获得专科护理。通过这个K23，我组织了一个 跨学科指导委员会和培训计划，以开发实用的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(梅丽莎·阿姆斯特朗，詹姆斯·加尔文)，传播和实施科学(斯蒂芬妮·斯塔拉斯)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 佛罗里达大学的疾病，它具有集成的远程医疗能力，跨学科护理 框架，以及进行这项研究的临床/研究资源。这5年中学到的专业知识和技能 职业发展奖将帮助我实现成为独立人士的长期职业目标 研究为LBD患者及其照顾者提供有效护理的调查者。

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.