Improving Primary Care Clinicians’ Advance Care Planning for Persons Living with Alzheimer’s Disease and Related Dementias

项目摘要/摘要 高级护理计划(ACP)对所有老年人来说都很困难，但痴呆症使ACP更加困难。 阿尔茨海默病和阿尔茨海默病相关的神经退行性痴呆(AD/ADRD)是无法治愈的， 进展性和终末期疾病对美国医疗体系、患者和家庭的影响是无与伦比的。 超过500万美国人患有AD/ADRD，患有AD/ADRD的人在#年失去决策能力 危重医疗疾病进展情况。临床医生必须辨别AD/ADRD患者何时以及如何 在AD/ADRD的所有阶段表达有效的治疗偏好。此外，人们之间也存在着显著的差异 在少数族裔社区与AD/ADRD合作。大多数AD/ADRD患者由他们的初级保健诊所管理 他们的初级保健团队几乎没有接受过痴呆症管理方面的教育和培训，也没有受到任何关注 痴呆症患者的ACP交流需求。初级保健团队，包括医生，促进实践 提供者、护士和社会工作者，能够很好地帮助AD/ADRD(PLWD)患者和 他们在非加太的家庭，特别是少数族裔社区，仍然缺乏关键的痴呆症特有的沟通技能。 对PLwD的循证ACP干预很少见，先前没有针对AD/ADRD ACP的临床试验 初级保健，重点是黑人可持续发展疾病的健康差距。我们经验丰富的调查团队已经 展示了AD ACP实践改进工具包(AD ACP工具包)的可行性和初步效果 初级保健团队。我们将测试我们的AD ACP工具包是否将使初级保健团队能够更好地进行 GOC讨论更有效率，从而增加GOC讨论的数量 控制。我们将向10家干预性初级保健诊所提供AD ACP工具包，并向10家对照诊所提供常规护理 在一个大型综合医疗保健系统内有大量黑人人口的诊所。我们的首要目标是进行一项试验 将AD ACP工具包与常规护理在护理讨论的目标和其他ACP措施上进行比较(N=600)。 我们将对Black PLwD进行分层分析。第二个目标是检查18个月的医疗保健 干预与对照诊所服务的所有PLWD的利用结果，并进行二次分析 黑色PLWD。最后，我们将通过在干预诊所(N=120)进行调查来评估实施情况，然后 访谈(N=60)，以了解黑人PLWD在ACP方面的任何差异。该项目面向国家研究院 Aging的使命是改善初级保健中患有AD/ADRD的老年人的护理。这项工作将改善 纳入初级保健团队针对老龄化相关疾病的ACP方法，并可能适用于 其他门诊专科，如肿瘤科或心脏科。

PROJECT SUMMARY/ABSTRACT Advance care planning (ACP) is difficult for all older adults, but dementia makes ACP even more difficult. Alzheimer's disease and Alzheimer's disease related neurodegenerative dementias (AD/ADRD) are incurable, progressive and terminal diseases with unparalleled impact on the US healthcare system, patients and families. Over 5 million Americans live with AD/ADRD, and people with AD/ADRD lose decision-making capacity years in advance of critical and serious medical illness. Clinicians must discern when and how people with AD/ADRD can express valid treatment preferences at all stages of AD/ADRD. Additionally, significant disparities exist for people with AD/ADRD in minority communities. Most people with AD/ADRD are managed by their primary care clinics whose primary care teams receive little education and training on dementia management, and no attention to dementia-specific ACP communication needs. Primary care teams, including physicians, advance practice providers, nurses and social workers, are well-positioned to empower people living with AD/ADRD (PLwD) and their families in ACP, especially minority communities, yet lack critical dementia-specific communication skills. Evidence-based ACP interventions for PLwD are rare, and no prior clinical trial addresses AD/ADRD ACP in primary care with a focus on health disparities in Black PLwD. Our experienced investigative team has demonstrated feasibility and preliminary efficacy of an AD ACP practice improvement toolkit (AD ACP toolkit) for primary care teams. We will test whether our AD ACP toolkit will enable primary care teams to better conduct GOC discussions more efficiently and thus increase the number of GOC discussions held as compared to controls. We will deliver the AD ACP toolkit to 10 intervention primary care clinics and usual care to 10 control clinics with large Black populations within a large integrated health care system. Our first aim is to conduct a trial comparing the AD ACP Toolkit to usual care on goals of care discussions and other ACP measures (N=600). We will conduct stratified analyses for Black PLwD. The second aim is to examine the 18-month healthcare utilization outcomes for all PLwD served by intervention vs control clinics and conduct secondary analyses for Black PLwD. Lastly, we will assess implementation via surveys in the intervention clinics (N=120) followed by interviews (N=60) to understand any disparities in ACP for Black PLwD. This project addresses National Institute on Aging's mission to improve care for older adults with AD/ADRD in primary care. This work will improve how to incorporate ACP approaches for aging-related conditions by primary care teams and may be adaptable to other outpatient specialties such as oncology or cardiology.