Caregivers' Reactions and Experience: Imaging Dementia Evidence for Amyloid Scanning CARE IDEAS

护理人员的反应和经验：淀粉样蛋白扫描的痴呆症影像证据护理理念

基本信息

批准号：
9316753
负责人：
Vincent Mor
金额：
$ 147.78万
依托单位：
BROWN UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2016
资助国家：
美国
起止时间：
2016-09-01 至 2017-09-14
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9316753
关键词：
Accounting Address Advance Directives Advocate Age Aged, 80 and over Aging Agreement Alzheimer&apos s Disease American American College of Radiology Imaging Network Amyloid Behavioral Biological Markers Brain Diseases Brain Pathology Caregivers Caring Characteristics Clinical Clinical Data Clinical Management Clinical Sciences Complement Data Data Reporting Decision Making Dementia Diagnosis Diagnostic tests Disease Progression Early Diagnosis Enrollment Expenditure Future Health Health Expenditures Health Planning Healthcare Hearing Image Impaired cognition Individual Internet Intervention Interview Label Life Link Medical Medical Imaging Medicare Medicare Part A Medicare claim Memory impairment Mental Health Services Neurobehavioral Manifestations Online Systems Patient Participation Patients Persons Phase Policies Population Positive Test Result Positron-Emission Tomography Primary Care Physician Primary Health Care Provider Public Policy Reaction Recruitment Activity Reporting Research Personnel Sampling Scanning Schedule Spouse Caregiver Spouses Support System Surveys Test Result Testing United States Centers for Medicare and Medicaid Services Visit behavioral/social science beneficiary cohort coping cost demographics depressive symptoms effective therapy evidence base experience follow-up functional disability health care service utilization health literacy health service use high risk informal caregiver innovation mild cognitive impairment mortality neuropathology prevent response social treatment planning trend

项目摘要

ABSTRACT An estimated 5.3 million Americans have Alzheimer's Disease (AD) in 2015. Barring scientific innovations, the number of Americans with AD is expected to increase to over 7 million by 2025 and to 13.8 million by 2050. In 2013 the Centers for Medicare and Medicaid Services (CMS) established that amyloid PET scans would be covered under the CMS Coverage with Evidence policy and the Imaging Dementia – Evidence for Amyloid Scanning (IDEAS) study was established. IDEAS examines how amyloid PET scans can guide doctors in diagnosing AD and other dementias, early in disease progression, where the cause is ambiguous, leading to changes in clinical management. With recruitment of 18,500 Medicare beneficiaries scheduled to begin in early 2016, supplemental studies expanding on the rich clinical data are being proposed. Thus, with full support of the IDEAS Executive Committee and the Alzheimer's Association, we propose the 5 year Caregiver Reactions and Experiences – IDEAS supplemental study (CARE IDEAS). It will fill important gaps in our understanding of how spouses serving as caregivers/advocates and patients react to the results of amyloid PET scans. We propose to recruit and interview, at baseline (phone), 6-9 months (phone and web), and 18 months (phone) a sample of 3500 Medicare eligible patients and their Medicare eligible spouses from among patients in the IDEAS study with positive and negative Amyloid PET scans. Using the National Health and Aging Trends Study as the survey core, we will ask patients' about their social circumstances, behavioral consequences of memory deficits and how and why they sought to confirm a diagnosis of AD via amyloid PET. We will also characterize spouses' health literacy, the breadth and resiliency of their support system and their involvement in seeking a PET scan. Using these survey data merged with IDEAS clinical and Medicare claims data, we will: (Aim 1) estimate the relationship between a positive Amyloid PET scan and patients' receipt of Medicare reimbursed AD related diagnostic tests and health care expenditures, controlling for selected patient and spouse characteristics. Second, we will (Aim 2) estimate the effect of primary care integration and engagement with patients' earlier diagnostic testing experience on the receipt of Medicare reimbursed AD related diagnostic tests and health care expenditures in future years; Third, (Aim 3) we will estimate the effect of amyloid PET scan results on patients' participation in care and life planning at follow-up (i.e. completing advanced directives, altered medical treatment plans and undertaking estate planning), controlling for patient and spouse characteristics. Fourth, (Aim 4) we will estimate the effect of the patients' test results on spouses' symptoms of depression and mental health service use. Finally, (Aim 5) we will use a web-based survey and follow up phone calls at 6 to 9 months post-enrollment to characterize intermediate changes in medical care use, life planning and other adjustments patients and spouses attribute to hearing and understanding their amyloid PET scan test results.

抽象的 2015 年估计有 530 万美国人患有阿尔茨海默病 (AD)。如果不进行科学创新，的美国人数量预计到 2025 年 AD 人口将增加到 700 万以上到 2050 年将达到 1380 万。在 2013 年，医疗保险和医疗补助服务中心 (CMS) 确定淀粉样蛋白 PET 扫描将 CMS 证据保险范围和影像痴呆 – 淀粉样蛋白证据承保扫描 (IDEAS) 研究的建立是为了研究淀粉样蛋白 PET 扫描如何指导医生。在疾病进展早期诊断 AD 和其他痴呆症，原因不明确，导致临床管理的变化计划于年初开始招募 18,500 名医疗保险受益人。 2016年，在丰富的临床数据的基础上提出了补充研究，并得到了全力支持。 IDEAS 执行委员会和阿尔茨海默病协会，我们提出 5 年护理者反应和经验 – IDEAS 补充研究（CARE IDEAS）它将填补我们理解上的重要空白。作为照顾者/倡导者的配偶和患者对淀粉样蛋白 PET 扫描结果的反应。建议在基线（电话）、6-9 个月（电话和网络）和 18 个月（电话）进行招募和面试从 3500 名符合 Medicare 资格的患者及其符合 Medicare 资格的配偶中抽取样本使用国家健康和老龄化趋势进行阳性和阴性淀粉样蛋白 PET 扫描的 IDEAS 研究。研究作为调查的核心，我们会询问患者的社会环境、行为后果记忆缺陷以及他们如何以及为何试图通过淀粉样蛋白 PET 来确诊 AD。描述配偶的健康素养、支持系统的广度和弹性以及他们的参与在寻求 PET 扫描时，使用这些调查数据与 IDEAS 临床和医疗保险索赔数据合并，我们将：（目标 1）估计淀粉样蛋白 PET 扫描阳性与患者接受医疗保险之间的关系报销与 AD 相关的诊断测试和医疗保健支出，控制选定的患者和其次，我们将（目标 2）评估初级保健整合的效果和参与患者在收到 Medicare 报销的 AD 时的早期诊断测试经验未来几年的相关诊断测试和医疗保健支出；第三，（目标3）我们将估计效果淀粉样蛋白 PET 扫描结果对患者参与护理和随访时生活规划的影响（即完成预先指示、改变医疗计划和进行遗产规划），控制患者第四，（目标4）我们将估计患者的测试结果对配偶的影响。最后，（目标 5）我们将使用基于网络的调查和调查。入组后 6 至 9 个月进行电话随访，以了解医疗保健的中间变化患者和配偶将其归因于听力和理解他们的使用、生活规划和其他调整淀粉样蛋白 PET 扫描测试结果。