PRAGMATIC TRIAL TO IMPROVE COMMUNICATION FOR PRIMARY CARE PATIENTS WITH ADRD

A.抽象--向R33相转变 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。家人和朋友(以下简称家人) 在整个护理过程中管理ADRD的最前线。临床医生依赖于替代判断 为那些在生命末期缺乏决策能力的人提供家庭支持。然而，家庭成员并不是 经常参与关于预后的讨论，而且经常对代孕决定准备不足- 制作。与没有ADRD的人相比，患有ADRD的人完成 提前指令或正式指定代理决策者，使他们面临更高的风险 不必要的痛苦和对繁重和昂贵的临终关怀的高度利用。 高级护理计划(ACP)是一种沟通过程，支持处于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保健的偏好。 早期启动ACP是ADRD护理中的当务之急，因为ADRD的病程长，而且它的进展性和 对决策能力的破坏性影响。很少有人关注于确定哪些战略 改善初级保健中ADRD患者及其家人的ACP，这是最常见的 初步诊断和持续的医疗管理。 我们的工作确立了使ACP正常化和让家庭参与初级保健的新战略的好处 访问和电子交互。共享选择(共享访问健康记录、议程设置 和尊重家庭参与的选择)是一种多组成部分的沟通干预，旨在 积极接触家庭成员并在初级保健方面支持非加太计划。分享选择包括1)一封信 从诊所引入使个人和家庭为非加太计划做好准备的倡议，2)接触辅导员 接受培训以领导非加太计划的讨论，3)人与家庭的议程设置，以协调关于 家庭和鼓励关于ACP的讨论，194)促进了患者门户网站的注册(针对患者和 家庭)将电子互动和信息获取扩大到家庭，以及5)教育和资源 关于诊所工作人员的ADRD。每个组件都改善了一系列沟通结果，但没有 以前被作为一个综合模型应用，或根据我们的建议在ADRD患者中进行研究。这项研究 包括与第一阶段(完善、试行测试)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式，将与2个不同的健康机构合作进行 大西洋中部地区的系统。该模型已通过R61机构进行了精炼和中试。 我们最初的R61/R33提案中规定的3个目标保持不变，只是诊所的数量更好 反映为我们的组织合作伙伴提供初级保健的现状，我们已删除次要保健 由于后勤管理不可行，本应从丧亲调查中收集结果。

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.