PRAGMATIC TRIAL TO IMPROVE COMMUNICATION FOR PRIMARY CARE PATIENTS WITH ADRD

A.摘要-过渡到R33阶段 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。家人和朋友（以下简称家人） 在整个护理过程中处于管理ADRD的最前沿。临床医生依赖于替代判断 在生命的最后阶段缺乏决策能力的人的家庭。然而，家庭成员并不 经常参与关于预后的讨论，并且通常对替代决策准备不足- 制作。与没有ADRD的人相比，患有ADRD的人不太可能完成 预先指示或正式指定一个代理决策者，使他们面临更大的风险， 不必要的痛苦和大量使用繁琐和昂贵的临终护理。 提前护理计划（ACP）是一个沟通过程，支持任何年龄或健康阶段的成年人， 了解和分享他们的个人价值观、生活目标和对未来医疗护理的偏好。 早期启动ACP是ADRD护理的必要条件，因为疾病病程长， 对决策能力的破坏性影响。很少有人注意到确定战略， 改善初级保健中ADRD患者及其家人的ACP，这是最常见的环境， 初步诊断和持续的医疗管理。 我们的工作确立了新策略的好处，使ACP正常化，并使家庭参与初级保健 访问和电子互动。共享选择（共享访问健康记录，议程设置 和尊重参与家庭的选择）是一种多成分的沟通干预，旨在 积极参与家庭成员和支持ACP在初级保健。分享选择包括1）一封信 从诊所引入一项倡议，为个人和家庭准备ACP，2）获得一个促进者 培训领导ACP讨论，3）个人-家庭对话设置，以调整关于 家庭和刺激关于ACP的讨论，19 4）促进了患者门户的注册（对于患者和 家庭）扩大电子互动和信息访问到家庭，和5）教育和资源 关于ADRD的信息每个组成部分都改善了一系列沟通成果，但没有 以前被应用为一个综合模型或研究的人与ADRD，因为我们建议。研究 包括与第一阶段（完善、试点测试）和第四阶段（有效性）相一致的两个阶段， 行为干预发展阶段模型，并将与2个不同的健康伙伴关系进行 中大西洋地区的系统。该模型已通过R61机制进行了改进和试点测试。 我们原先建议的R61/R33方案所订的3个目标维持不变，只是诊所数目较 反映了我们的组织合作伙伴的初级保健的现状，我们已经删除了二级 由于在后勤上无法管理，将从丧亲之痛调查中收集结果。

A. Abstract- Transition to R33 Phase 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 and friends (hereafter referred to as family) are at the forefront of managing ADRD across the continuum of care. Clinicians rely on the substituted judgement of family for persons who lack decisional capacity toward the end of life. However, family members are not routinely engaged in discussions about prognosis and are often poorly prepared for surrogate decision- making. Compared to persons without ADRD, persons living with ADRD are less likely to complete an advance directive or formally designate a surrogate decision-maker, placing them at heightened risk for unnecessary suffering and high utilization of burdensome and costly end-of-life care. Advance care planning (ACP) is a communication process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. Early initiation of ACP is an imperative in ADRD care due to the long course of illness and its progressive and devastating effects on decision-making capacity. Little attention has been directed at identifying strategies that improve ACP for persons with ADRD and their family in primary care, which is the most common setting of initial diagnosis and ongoing medical management. Our work establishes the benefit of novel strategies to normalize ACP and engage family in primary care visits and electronic interactions. SHARING Choices (Sharing access to Health records, Agenda setting and RespectING Choices to Engage Families) is a multicomponent communication intervention that seeks to proactively engage family members and support ACP in primary care. SHARING Choices includes 1) a letter from the clinic introducing an initiative to prepare persons and families for ACP, 2) access to a facilitator trained to lead ACP discussions, 3) person-family agenda-setting to align perspectives about the role of family and stimulate discussion about ACP,19 4) facilitated registration to the patient portal (for patient and family) to extend electronic interactions and information access to family, and 5) education and resources about ADRD for clinic staff. Each component improves a range of communication outcomes, but has not previously been applied as an integrated model or studied in persons with ADRD, as we propose. The study encompasses two phases aligned with Stage I (refinement, pilot testing) and Stage IV (effectiveness) of the behavioral intervention development Stage Model and will be conducted in partnership with 2 diverse health systems in the MidAtlantic region. The model has been refined and pilot tested through the R61 mechanism. The 3 aims specified in our original R61/R33 proposal remain the same except that the number of clinics better reflect the current status of primary care for our organizational partners and we have removed secondary outcomes that were to be collected from bereavement surveys due to being logistically infeasible to administer.