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

项目总结 阿尔茨海默病和相关痴呆症(ADRD)是所有疾病中最严重的残疾和代价最高的 健康状况和第五大死因。家庭照顾者处于管理ADRD的最前线 在连续的护理过程中，但通常不包括在关于预后的讨论中，而且往往很差 准备参与代孕决策。与没有ADRD的老年人相比，那些有ADRD的老年人 不太可能完成预先指令并正式指定代理决策者，并且是 增加了不必要的痛苦和繁重的临终关怀的风险。高级护理计划寻求 改善有关个人价值观、目标和护理偏好的沟通，但通常以 具体决定，最常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患者最初得到诊断和医学检查的地方 有管理的。我们提出了一项多成分沟通干预的发展研究，称为 分享，积极吸引家庭照顾者，并支持初级保健中的提前护理计划。 干预内容包括：1.)初级保健诊所的一封信，介绍了一种新的高级保健 规划倡议，2.)个人-家庭议程-设置以协调患者和家庭对角色的看法 家庭成员参与初级保健互动并激发对提前保健计划的兴趣，3.)进行中 接触受过培训的护士或社会工作者，以领导高级护理计划对话，4.)促进的 注册患者门户(针对患者和家属)，以启用和扩展电子交互以及 向家庭照顾者提供信息。研究目标反映了与阶段1A(改进)相一致的两个阶段 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- 以流程为中心，与初级保健利益相关者(医生、护士从业者、 社会工作者、工作人员)、ADRD患者和他们的家庭照顾者。我们将反复调整和预测试 该方案在10-15名患者-照顾者双方在1个初级保健实践。目标1将产生一个可测试的干预 协议。第二，我们将与4家初级保健诊所合作，进行两组随机的1B阶段 试验中，124个双联体接受常规护理的控制方案，124个双联体接受干预 协议。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(主要结果)进行沟通，在死亡患者中，进行干预(与对照组) 患者将经历更高质量的临终关怀，失去亲人的家庭照顾者将做好更好的准备 用于替代决策，并报告较少的焦虑和抑郁症状(次要结果)。 我们将对执行情况进行定性评估，以确定可能影响传播《 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.