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

阿尔茨海默病医疗顾问：针对护理人员的症状和体征管理工具包

• 批准号: 8471935
• 负责人: PHILIP D SLOANE
• 金额: $ 52.82万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-09-27 至 2017-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8471935
• 关键词: Accident and Emergency department; Acute; Address; Adopted; Age; Agitation; Alzheimer' s Disease; Anxiety; Area; Behavioral; Behavioral Symptoms; Caregivers; Caring; Clinical Trials; Cognitive; Collaborations; Communication; Comorbidity; Consultations; Data; Decision Making; Dehydration; Dementia; Development; Discipline of Nursing; Disease; Disease Progression; Education; Effectiveness; Evaluation; Family; Family Caregiver; Family member; Fever; Focus Groups; Goals; Health; Health Personnel; Health Professional; Health system; Home environment; Hospital Departments; Hospitalization; Internet; Intervention; Knowledge; Life; Literature; Measures; Medical; Mental Depression; Modification; Monitor; North Carolina; Nurses; Nursing Protocols; Outcome; Pain; Pain Measurement; Participant; Persons; Predisposition; Primary Health Care; Printing; Protocols documentation; Provider; Proxy; Psychometrics; Race; Reading; Recommendation; Reporting; Research; Resources; Rest; Self Efficacy; Series; Services; Shortness of Breath; Signs and Symptoms; Site; Symptoms; System; Techniques; Testing; Time; Training; Triage; Universities; Visit; base; cost; decision-making capacity; design; evidence base; frailty; health care service utilization; health literacy; implementation trial; improved; medical attention; meetings; programs; protocol development; satisfaction; skills; symptom management; tool

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. PUBLIC HEALTH RELEVANCE: Approximately five million persons in the U.S.A. currently suffer from Alzheimer's Disease and Related Disorders (AD), and that number is anticipated to grow to between 12 and 14 million by 2050. The majority of persons with AD are live at home with family members, who serve as informal caregivers and often need to evaluate new symptoms and signs and communicate with health professionals about them. Few resources exist to assist family caregivers of persons with AD in interpreting symptoms and signs. The project will develop, test, and disseminate materials that educate caregivers and assist them in making decisions around new and increasing symptoms and signs that may reflect a serious medical condition. The goal is for informal caregivers to perform better assessments and communicate more effectively with health professionals around symptoms and signs, thereby resulting in improved caregiver self-confidence and more appropriate health services utilization.

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）护理人员一起生活，他们必须评估、管理医疗症状（例如疼痛和呼吸急促）和体征（例如发烧和躁动）并与医疗保健提供者进行沟通。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，前往医疗机构的交通变得越来越困难。因此，非正式护理人员需要一些工具来帮助他们评估、决策和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、完善、评估、最终确定和传播阿尔茨海默病医疗顾问 (AlzMA)，这是一个多组件工具包，将帮助 AD 患者的非正式护理人员识别、评估和管理新的或增加的疾病症状和体征，然后在必要时清晰有效地将信息传达给医疗保健提供者。 AlzMA 将提供评估各种可能疾病的工具，包括由值班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 AlzMA 接受临床试验测试，并被为 AD 患者服务的医疗实践和卫生系统广泛采用。 在该项目的前两年，我们将通过一系列涉及我们的研究团队、顾问临床医生和非正式护理人员的步骤来开发、测试和完善该工具包（目标 1）。我们还将制定和完善护理人员对评估和管理症状和体征能力的信心衡量标准（目标 2）。在该项目的第 3 年和第 4 年（目标 3），我们将在由两个不同医疗机构管理的 200 名 AD 患者的不同护理人员中进行 AlzMA 工具包的实施试验。该试验将 (a) 从护理人员的使用情况、获得的知识、护理人员和医疗实践人员的满意度以及有效性方面评估该工具包； (b) 评估基线、6 个月和 12 个月时护理人员的以下结果：管理痴呆、焦虑、对症状和体征管理的信心、负担和抑郁的自我效能； (c) 在工具包使用之前和使用期间初步评估急诊科就诊率和住院率。分析将评估护理人员因素和工具包格式对上述结果的影响。在第 5 年，我们将通过网络应用程序和 DVD 在全国范围内传播该工具包的组成部分，并使该系统可供医疗实践和卫生系统使用（目标 4）；此外，我们还将完成研究成果的分析和传播。 该项目代表了北卡罗来纳大学教堂山分校团队的独特合作；杜克大学家庭支持计划； Keona Health 是一家致力于在线方案和护士辅助分诊以及症状评估和管理决策支持的公司。 公共卫生相关性：目前，美国大约有 500 万人患有阿尔茨海默氏病及相关疾病 (AD)，预计到 2050 年，这一数字将增长到 12 至 1400 万人。大多数 AD 患者与家人一起住在家里，家人充当非正式的看护者，经常需要评估新的症状和体征，并与卫生专业人员就这些症状和体征进行沟通。很少有资源可以帮助 AD 患者的家庭护理人员解释症状和体征。该项目将开发、测试和传播材料，以教育护理人员并帮助他们围绕可能反映严重医疗状况的新的和不断增加的症状和体征做出决定。目标是让非正式护理人员就症状和体征进行更好的评估并与卫生专业人员进行更有效的沟通，从而提高护理人员的自信心和更适当的卫生服务利用。