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(通常是家人)照顾者住在家里，他们必须评估、管理医疗保健提供者，并就医疗症状(例如疼痛和呼吸急促)和体征(例如发烧和烦躁)与医疗保健提供者进行沟通。随着痴呆症的发展，对并存疾病的易感性增加，沟通和决策能力降低，运送到医疗设施变得越来越困难。因此，非正式的照顾者需要工具来帮助他们评估、做出决定并管理可能代表新的或正在演变的疾病的症状和体征。拟议的项目将开发、现场测试、改进、评估、最终确定和传播阿尔茨海默氏症医疗顾问(阿尔茨海默病医疗顾问)，这是一个多组件工具包，将帮助阿尔茨海默病患者的非正式照顾者识别、评估和管理新的或不断增加的疾病症状和体征，然后在必要时将信息清楚有效地传达给医疗保健提供者。阿尔茨海默病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，并以在线和印刷形式提供。我们的长期目标是让老年痴呆症患者接受临床试验测试，并被服务于阿尔茨海默病患者的医疗实践和卫生系统广泛采用。在项目的头两年，我们将通过一系列步骤开发、测试和改进工具包，包括我们的研究团队、咨询临床医生和非正式护理人员(目标1)。我们还将制定和改进护理人员对评估和管理症状和体征的能力的信心的衡量标准(目标2)。在项目的第三年和第四年(目标3)，我们将在由两种不同医疗实践管理的200名阿尔茨海默病患者的不同照顾者中进行阿尔茨海默氏症工具包的实施试验。该试验将(A)评估护理者使用情况、获得的知识、护理者和医务人员的满意度以及有效性；(B)在基线、6个月和12个月时评估以下护理者的结果：在管理痴呆、焦虑、对症状和体征管理的信心、负担和抑郁方面的自我效能；(C)在初步基础上，在使用工具包之前和期间评估急诊科就诊和住院率。分析将评估护理者因素和工具包格式对上述结果的影响。在第五年期间，我们将通过网络应用程序和DVD在全国范围内传播工具包的组成部分，并将该系统提供给医疗实践和卫生系统(目标4)；此外，我们将完成对我们的研究结果的分析和传播。这个项目代表着来自北卡罗来纳大学教堂山分校、杜克家庭支持计划和Keona Health公司的团队的独特合作，Keona Health公司致力于在线礼仪和护士辅助的分诊以及关于症状评估和管理的决策支持。

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.