Engaging underserved communities in end-of-life conversations: a cluster, randomized controlled trial

许多黑人/非裔美国人和西班牙裔/拉丁裔患者更有可能接受低质量的终末期化疗。 生活医疗保健比白色个人-事实上，他们比白色美国人死亡的可能性高3倍 在重症监护室待了很长时间预先护理计划（ACP）-与一个人讨论自己的愿望的过程 亲人和临床医生，然后在预先指示（AD）中记录他们-可以帮助减少这些 通过阻止不太可能减少痛苦或改善的昂贵/繁琐的治疗， 生活质量尽管约60%的美国人参与了ACP，但不到25%的服务不足人群已经这样做了- 很大程度上是由于对医疗保健系统/临床医生的不信任，以及不愿意讨论死亡和垂死。这 一项研究利用服务不足的社区现有的、可信的社交网络部署两个基于社区的 ACP干预措施，并研究其作用机制。通过确定哪些干预措施 在服务不足的社区参与ACP（以及为什么），该项目将有助于提高生命终结的质量 护理，减少不必要的痛苦，以及节省公共卫生资源的临终医疗费用。 在过去的5年里，我们的团队研究了一个便宜且易于扩展的严肃游戏，名为Hello 这引发了对敏感的生命终结问题的讨论。在多项研究中，参与者报告说， 你好是令人愉快的，大开眼界，激励-98%的参与者随后进行了至少1次ACP 行为最近，我们为“Hello”开发了一个全国性的基于社区的交付模式，并确认了 游戏的可接受性，参与53个服务不足的社区在非加太（n= 1，165）。我们现在提出一个3- 在不同的、服务不足的人群中进行的一项武装、集群、随机对照试验（RCT）， “你好”（第1组）与全国推广的结构化工作簿“对话项目启动器”的功效 Kit "（第2组）和一个名为“Table Topics”的非ACP游戏（安慰剂/注意力控制;第3组）。我们将 在美国随机选择75个服务不足的社区（20名参与者/研究中心; n= 1，500）。主要结局 完成视觉验证的AD;次要结局包括其他ACP行为的表现。 这项研究将通过以下方式提供关键的科学进展：1）提供两种广泛使用且易于使用的 可扩展但尚未循证的干预措施; 2）通过以下方式推进干预设计科学 检查干预措施的潜在作用机制（即沟通质量和社会 文化环境）;以及3）评估我们的基于社区的交付模式如何以及为什么参与 在ACP的社区。如果RCT有阴性结果，我们仍然会获得一个强大的 了解社会文化环境在人口健康研究中的作用。如果成功，这个项目 将提供一个以证据为基础的模式，使服务不足的社区参与非加太，沿着一个强大的 了解如何设计和实施与其他人群健康相关的基于社区的举措- 为服务不足的人开展的研究或倡议。

Many Black/African Americans and Hispanic/Latinx patients are much more likely to receive low quality end-of- life medical care than White individuals– in fact, they are 3 times more likely than white Americans to die after a lengthy intensive care unit stay. Advance care planning (ACP)– the process of discussing one’s wishes with loved ones and clinicians, and then documenting them in an advance directive (AD)– can help reduce these health inequities by preventing costly/burdensome treatments that are unlikely to reduce suffering or improve quality of life. Though ~60% of Americans engage in ACP, <25% of underserved populations have done so– in large part due to distrust of the healthcare system/clinicians, and reluctance to discuss death and dying. This study harnesses underserved communities’ existing, trusted social networks to deploy two community-based ACP interventions and study their mechanisms of action. By identifying which interventions increase engagement in ACP in underserved communities (and why), this project will help improve quality of end-of-life care, reduce unnecessary suffering, and end-of-life healthcare costs which conserves public health resources. Over the past 5 years, our team has studied an inexpensive and readily scalable serious game called Hello that prompts discussion of sensitive end-of-life issues. Across multiple studies, participants report that playing Hello is enjoyable, eye-opening, and motivating —98% of participants subsequently performed at least 1 ACP behavior. Recently, we developed a nationwide community-based delivery model for ‘Hello’ and confirmed the game’s acceptability by engaging 53 underserved communities in ACP (n=1,165). We now propose a 3- armed, cluster, randomized controlled trial (RCT) in diverse, underserved populations to compare the efficacy of ‘Hello’ (Group 1) with a nationally promoted structured workbook ‘The Conversation Project Starter Kit,’ (Group 2), and a non-ACP game called ‘Table Topics,’ (placebo/attention control; Group 3). We will randomize 75 underserved communities across the US (20 participants/site; n=1,500). The primary outcome is completion of a visually verified AD; secondary outcomes include performance of other ACP behaviors. This study will provide key scientific advancements by: 1) providing efficacy data on two widely used and easily scalable but not yet evidence-based interventions; 2) advancing the science of interventional design by examining the interventions’ potential mechanisms of action (i.e. quality of communication, and role of socio- cultural environment); and 3) assessing how and why our community-based delivery model engages underserved communities in ACP. Should the RCT have negative findings, we still will have gained a robust understanding of the sociocultural environment’s role in population health research. If successful, this project will provide an evidence-based model for engaging underserved communities in ACP, along with a robust understanding of how to design and deliver community-based initiatives relevant for other population health- based research or initiatives for the underserved.