Involving Family to Improve Advance Care Planning for Primary Care Patients with ADRD

项目摘要 阿尔茨海默氏病和相关痴呆症（ADRD）是所有疾病中最严重的致残性疾病， 健康状况和第五大死因。家庭护理人员处于ADRD管理的最前沿 但通常不包括在关于预后的讨论中， 准备参与替代决策。与没有ADRD的老年人相比，ADRD患者 不太可能完成预先指示并正式指定代理决策者， 承受不必要的痛苦和繁重的临终护理的风险更高。提前护理计划寻求 改善关于个人价值观、目标和护理偏好的沟通，但通常针对 具体决定，最常见的是在住院医院或疗养院。针对高级护理的干预措施很少 初级保健计划，这是大多数ADRD患者最初被诊断和医疗 管理。我们提出了一个多成分沟通干预的发展研究，称为 分享，积极参与家庭照顾者，并支持初级保健中的提前护理计划。 干预内容包括：1.）一封来自初级保健实践的信，介绍了一种新的高级护理， 规划倡议，2.）个人-家庭关系设置，以调整患者和家庭对角色的看法 家庭成员在初级保健的相互作用，并激发提前护理规划的兴趣，3.）正在进行 获得经过培训的护士或社会工作者，以领导提前护理计划对话，4。促进 患者门户注册（针对患者和家属），以启用和扩展电子交互， 向家庭照顾者提供信息。研究目标反映了与阶段1A（改进）一致的两个阶段 和NIH行为干预发展阶段模型的1B阶段（测试）。首先，我们使用一个用户- 以中心流程为中心，通过初级保健利益相关者（医生，执业护士， 社会工作者，工作人员），ADRD患者及其家庭护理人员。我们将反复适应和预先测试 该方案在1个初级保健诊所中以10-15名患者-护理人员为一对。目标1将产生一个可测试的干预 议定书第二，我们将与4家初级保健机构合作，进行两组随机化1B阶段 一项试验，其中124对接受常规护理的对照方案，124对接受干预 议定书我们假设，干预（与对照）家庭照顾者将报告更好的质量， 在6个月时的沟通（主要结局）和死亡患者中，干预（与对照组相比） 患者将获得更高质量的临终关怀，丧亲家庭护理人员将做好更充分的准备 替代决策和报告较少的焦虑和抑郁症状（次要结局）。 我们将对实施情况进行定性评估，以确定可能影响 干预目标2将提供关键信息和证据，以便利随后的传播。

PROJECT SUMMARY Alzheimer's Disease and Related Dementias (ADRD) are among the most profoundly disabling and costly of all health conditions and the 5th leading cause of death. Family caregivers are at the forefront of managing ADRD across the continuum of care but are not routinely included in discussions about prognosis and are often poorly prepared to engage in surrogate decision-making. Compared to older adults without ADRD, those with ADRD are less likely to complete an advance directive and to formally designate a surrogate decision-maker, and are at heightened risk for unnecessary suffering and burdensome end-of-life care. Advance care planning seeks to improve communication about individual values, goals, and preference for care, but typically targets a specific decision, most often in the inpatient hospital or nursing home. Few interventions target advance care planning in primary care, which is where most persons with ADRD are initially diagnosed and medically managed. We propose a developmental study of a multicomponent communication intervention, referred to as SHARE, to proactively engage family caregivers and support advance care planning in primary care. Intervention components include: 1.) a letter from the primary care practice introducing a new advance care planning initiative, 2.) person-family agenda-setting to align patient and family perspectives regarding the role of the family member in primary care interactions and stimulate interest in advance care planning, 3.) ongoing access to a nurse or social worker trained to lead advance care planning conversations, 4.) facilitated registration for the patient portal (for patient and family) to enable and extend electronic interactions and information access to family caregivers. Study Aims reflect two phases that aligned with Stage 1A (refinement) and Stage 1B (testing) of the NIH behavioral intervention development Stage Model. First, we use a user- centered process to refine SHARE with input from primary care stakeholders (physicians, nurse practitioners, social workers, staff), patients with ADRD, and their family caregivers. We will iteratively adapt and pre-test the protocol in 10-15 patient-caregiver dyads at 1 primary care practice. Aim 1 will yield a testable intervention protocol. Second, we will partner with 4 primary care practices to conduct a two-group randomized Stage 1B trial in which 124 dyads receive a control protocol of usual care and 124 dyads receive the intervention protocol. We hypothesize that intervention (versus control) family caregivers will report better quality of communication at 6 months (primary outcome) and among patients who die, that intervention (versus control) patients will experience higher quality end-of-life care and bereaved family caregivers will be better prepared for surrogate decision-making and report fewer symptoms of anxiety and depression (secondary outcomes). We will qualitatively assess the implementation context to identify factors that may affect dissemination of the intervention. Aim 2 will provide critical information and evidence to facilitate subsequent dissemination.