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

项目摘要 在美国，慢性病导致的死亡和残疾最多，而美国印第安人/阿拉斯加州 土著人（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、肝硬化、中风、肺炎、肾病和高血压。年龄 55岁及以上，90%的人至少有一种慢性病，而美国同龄人的这一比例为78%。作为老阿奈 人口迅速增加，严重疾病的发病率高于一般人口，因此迫切需要 需要制定战略，为重病的ANAIs提供适合文化的姑息治疗和临终关怀干预措施。 然而，ANAIs使用姑息治疗的可能性远远低于美国同行，包括提前护理计划 (ACP)这涉及到讨论病人的价值观和目标，使护理与病人的喜好保持一致。ACP导致 为患者、他们的家人和卫生系统带来更好的结果，包括减少抑郁、焦虑和 悲伤，更少的非有益的临终治疗，并降低成本。ACP通常提前记录 指定患者对维持生命治疗的偏好以及谁可以进行医疗指导的指令（AD） 代表他们的决定。然而，只有不到三分之一的严重患病的美国成年人患有AD，并且年龄在55岁及以上 只有白色同龄人的一半可能有广告。以前的研究表明，ANAIs将参与 ACP和完整的广告，当获得及时和文化上适当的ACP对话，但没有ACP 交流干预措施已通过ANAIs进行了严格测试。我们的团队利用社区参与 在文化上定制ACP沟通干预措施并试点定制干预措施的方法-快速启动 ANAI与68名重病成人ANAI在中南部基金会（SCF），一个部落卫生系统在阿拉斯加。我们 招募了97%的目标样本（n=70），并在随访时保留了>75%的患者。我们还发现， 的患者表示，Jumpstart ANAI帮助他们与初级保健提供者进行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， 部落卫生系统，并使用一种创新的1型混合有效性-实施评估它 approach.我们的具体目标是：1）让利益攸关方参与制定部落健康实施计划 将Jumpstart ANAI整合到常规初级保健实践中的系统; 2）进行随机分组试验 与40名初级保健提供者和280名重症ANAI患者一起测试Jumpstart ANAI的有效性， 与常规护理相比，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： 实施研究综合框架，以评估实施的障碍和促进因素 启动ANAI全系统。改善文化上适当的循证ACP的获取和交付， 阿拉斯加部落健康领导人和社区的高度优先事项。通过评估文化的有效性， 定制的ACP干预和定制实施干预到常规护理，这项研究将提供 改善重症ANAI患者及其家人的姑息治疗和临终关怀的关键证据。

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.