Alzheimers Medical Advisor: A Symptom and Sign Management Toolkit for Caregivers

描述（由申请人提供）：大多数阿尔茨海默病（AD）患者与非正式（通常是家庭）护理人员一起生活在家中，他们必须评估、管理并与医疗保健提供者沟通医疗症状（例如疼痛和呼吸短促）和体征（例如发烧和躁动）。随着痴呆症的进展，对合并症的易感性增加，沟通和决策能力下降，前往医疗设施的运输变得越来越困难。因此，非正式护理人员需要工具来帮助他们评估、决策和管理可能代表新的或正在发展的医疗疾病的症状和体征。拟议的项目将开发、实地测试、完善、评估、最终确定和传播阿尔茨海默氏症医学顾问（AlzMA），这是一个多组件工具包，将帮助阿尔茨海默氏症患者的非正式护理人员识别、评估和管理新的或日益增加的疾病症状和体征，然后，如有必要，清晰有效地将信息传达给卫生保健提供者。AlzMA将提供各种工具来评估各种可能的疾病，包括由随叫随到的护士进行审查和咨询，并以在线和打印形式提供。我们的长期目标是让AlzMA进行临床试验，并被服务于AD患者的医疗实践和卫生系统广泛采用。在项目的前两年，我们将通过一系列涉及我们的研究团队、临床医生顾问和非正式护理人员的步骤来开发、测试和完善工具包（目标1）。我们还将开发和完善护理人员对评估和管理症状和体征能力的信心（目标2）。在项目的第3年和第4年（目标3），我们将在200名AD患者的不同护理人员中进行AlzMA工具包的实施试验，这些护理人员由两种不同的医疗实践进行管理。试验将(a)从护理人员的使用、获得的知识、护理人员和医务人员的满意度以及有效性方面评估工具包；(b)在基线、6个月和12个月时评估以下护理人员的结果：管理痴呆的自我效能、焦虑、对症状和体征管理的信心、负担和抑郁；(c)在使用工具包之前和期间初步评估急诊科就诊率和住院率。分析将评估护理者因素和工具包格式对上述结果的影响。在第五年，我们将通过网络应用程序和DVD在全国传播工具包的组成部分，并使该系统可供医疗实践和卫生系统使用（目标4）；此外，我们将完成我们的研究成果的分析和传播。该项目代表了来自北卡罗来纳大学教堂山分校的团队的独特合作；杜克大学家庭支持计划；以及Keona Health，一家致力于在线协议和护士辅助分诊以及症状评估和管理决策支持的公司。

DESCRIPTION (provided by applicant): Most persons with Alzheimer's disease (AD) live at home with informal (usually family) caregivers who must evaluate, manage, and communicate with health care providers about medical symptoms (e.g., pain and shortness of breath) and signs (e.g., fever and agitation). As dementia progresses, susceptibility to comorbid illness increases, communication and decision-making capacity are reduced, and transport to medical facilities becomes increasingly difficult. As a result, informal caregivers need tools that will hep them evaluate, make decisions about, and manage symptoms and signs that could represent new or evolving medical illness. The proposed project will develop, field test, refine, evaluate, finalize, and disseminate the Alzheimer's Medical Advisor (AlzMA), a multi-component toolkit that will assist informal caregivers of persons with AD to identify, evaluate, and manage new or increasing symptoms and signs of illness and then, if necessary, clearly and effectively communicate the information to health care providers. AlzMA will provide tools to evaluate a wide range of possible illnesses, include review and consultation by an on-call nurse, and be available in online and printed formats. Our long-term goal is for the AlzMA to undergo clinical trial testing and be adopted widely by medical practices and health systems serving persons with AD. During the first 2 years of the project we will develop, test, and refine the toolkit through a series of steps involving our research team, consultant clinicians, and informal caregivers (Aim 1). We will also develop and refine a measure of caregiver confidence in the ability to assess and manage symptoms and signs (Aim 2). During years 3 and 4 of the project (Aim 3) we will conduct an implementation trial of the AlzMA toolkit among 200 diverse caregivers of persons with AD who are managed by two diverse medical practices. The trial will (a) evaluate the toolkit in terms of caregiver use, knowledge gained, satisfaction of caregivers and medical practice staff, and effectiveness; (b) evaluate the following caregiver outcomes at baseline, 6 and 12 months: self-efficacy in managing dementia, anxiety, confidence in symptom and sign management, burden, and depression; and (c) on a preliminary basis, evaluate emergency department visit and hospitalization rates before and during toolkit use. Analyses will evaluate the impact of caregiver factors and toolkit format on the above outcomes. During year 5 we will disseminate components of the toolkit nationally through a web application and DVD, and make the system available to medical practices and health systems (Aim 4); in addition, we will complete the analysis and dissemination of our research results. This project represents a unique collaboration of teams from the University of North Carolina at Chapel Hill; the Duke Family Support Program; and Keona Health, a company devoted to online protocol and nurse- assisted triage and decision support on symptom evaluation and management.