Jumpstarting Culturally-informed Advance Care Planning with ANAI People in Primary Care

项目总结 在美国和美国印第安人/阿拉斯加，慢性病造成的死亡和残疾最多 原住民(Anais)比所有其他种族的人更有可能死于心脏病、糖尿病、慢性 下呼吸道疾病、肝硬变、中风、肺炎、肾脏疾病和高血压。在Anais年龄段中 55岁及以上的人中，90%的人至少有一种慢性病，而美国同龄人的这一比例为78%。作为年长的阿奈 人口迅速增加，随着重疾率高于一般人口，有一个紧迫的问题 需要制定战略，为重病ANAIS提供文化上量身定制的姑息和临终关怀干预。 然而，与他们的美国同龄人相比，Anais使用姑息治疗的可能性要小得多，包括提前护理计划 (ACP)，其中涉及讨论患者的价值观和目标，以使护理与患者的偏好保持一致。机场核心计划通向 为患者、他们的家人和卫生系统提供更好的结果，包括减少抑郁、焦虑和 悲痛，更少的无益临终治疗，并降低成本。机场核心计划通常会预先记录在案。 指令(ADS)，指定患者对维持生命治疗的偏好，以及谁可以使医疗 代表他们做出决定。然而，只有不到三分之一的重病美国成年人有广告，而55岁及以上的Anais 有广告的可能性只有白人同龄人的一半。之前的研究表明，Anais将参与 ACP和完整的广告，当被允许访问及时和文化上合适的ACP对话时，但没有ACP 传播干预措施已与ANAIS进行了严格的测试。我们的团队利用社区参与 从文化上定制ACP沟通干预和试点定制干预的方法-JumpStart Anai--在阿拉斯加的部落卫生系统--南方中心基金会(SCF)，有68名患有重病的成年Anais人。我们 招募了目标样本的97%(n=70)，并在随访时保留了75%的患者。我们还发现95%的人 的患者表示，Jumpstart Anai帮助他们与他们的初级保健提供者进行了ACP对话。 该项目扩展了强大的社区-学术合作伙伴关系，以实施JumpStart Anai 部落保健系统，并使用一种创新的1型混合方案对其进行评估--实施 接近。我们的具体目标是：1)让利益攸关方参与制定部落保健的实施计划 将JumpStart Anai整合到常规初级保健实践中的系统；2)进行整群随机试验 与40名初级保健提供者和280名重症ANAI患者一起测试JumpStart ANAI对 与通常的护理相比，增加ACP；以及3)使用以下方法进行严格的混合方法过程评估 评估执行障碍和促进者的执行研究综合框架 在整个系统范围内启动Anai。改善获得和交付文化上合适的循证机场核心计划是 这是阿拉斯加部落卫生领袖和社区的高度优先事项。通过评估一种文化的有效性 将量身定做的ACP干预措施和量身定做的干预措施落实到常规护理中，本研究将提供 改善重症Anai患者及其家人的姑息治疗和临终护理的关键证据。

PROJECT SUMMARY Chronic disease causes the most death and disability in the United States (US), and American Indian/Alaska Native people (ANAIs) are more likely than people of all other races to die of heart disease, diabetes, chronic lower respiratory disease, cirrhosis, stroke, pneumonia, kidney disease, and hypertension. Among ANAIs age 55 and older, 90% have at least one chronic condition, compared with 78% of their US peers. As the older ANAI population rapidly increases, with higher rates of serious illness than the general population, there is an urgent need for strategies to provide culturally tailored palliative and end-of-life care interventions for seriously ill ANAIs. However, ANAIs are far less likely than their US peers to use palliative care, including advance care planning (ACP), which involves discussing patient values and goals to align care with patient preferences. ACP leads to better outcomes for patients, their families, and health systems, including decreased depression, anxiety, and grief, fewer non-beneficial end-of-life treatments, and reduced cost. ACP is typically documented in advance directives (ADs) that specify patient preferences for life-sustaining treatments and who can make medical decisions on their behalf. Yet, less than a third of seriously ill US adults have ADs, and ANAIs age 55 and older are only half as likely to have ADs as their White peers. Previous research suggests that ANAIs will engage in ACP and complete ADs when given access to timely and culturally appropriate ACP conversations, but no ACP communication interventions have been rigorously tested with ANAIs. Our team used community engagement methods to culturally tailor an ACP communication intervention and pilot the tailored intervention—Jumpstart ANAI—with 68 seriously ill adult ANAIs at Southcentral Foundation (SCF), a Tribal health system in Alaska. We recruited 97% of the target sample (n=70) and retained >75% of patients at follow-up. We also found that 95% of patients stated that Jumpstart ANAI helped them to have ACP conversations with their primary care providers. This project expands upon a strong community-academic partnership to implement Jumpstart ANAI in the Tribal health system and evaluate it using an innovative type 1 hybrid effectiveness-implementation approach. Our specific aims are to: 1) Engage stakeholders to tailor an implementation plan for the Tribal health system that integrates Jumpstart ANAI into routine primary care practice; 2) Conduct a cluster-randomized trial with 40 primary care providers and 280 seriously ill ANAI patients to test the effectiveness of Jumpstart ANAI for increasing ACP as compared to usual care; and 3) Conduct a rigorous mixed-methods process evaluation using the Consolidated Framework for Implementation Research to assess barriers and facilitators to implementing Jumpstart ANAI system-wide. Improving access to and delivery of culturally appropriate evidence-based ACP is a high priority for Alaska’s Tribal health leaders and communities. By evaluating the effectiveness of a culturally tailored ACP intervention and tailoring implementation of the intervention into routine care, this study will provide critical evidence for improving palliative care and end-of-life care for seriously ill ANAI people and their families.