Planning Advance Care Together (PACT) to Improve Engagement in Advance Care Planning among Advanced Cancer Patients

项目摘要/摘要 参与提前护理计划(ACP)，其中包括进行临终关怀(EoL)对话和 完成先行指令(ADS)(例如，生前遗嘱、医疗保健代理)已被证明有助于改善 提高护理质量，减少生命末期的痛苦。然而，只有不到一半的晚期癌症患者 参与ACP或完整的广告。ACP参与和AD完成的一个经常被忽视的障碍是 没有认识到大多数癌症患者报告ACP是一个社会过程，在这个过程中他们 希望让多个亲人和家庭成员参与他们的决策过程。沈博士的工作，在 与她的合作研究员普里格森博士的合作表明，患者经常报告涉及 家庭成员是参与ACP的关键关注和需要，70.7%的人报告他们的EoL护理 治疗偏好是围绕着对家人的担忧而形成的。在此基础上开展试点工作 和先前的工作表明患者倾向于将ACP作为一个社交过程参与，这项研究旨在发展 和试点测试移动应用程序[共同计划高级护理(PACT)]，旨在提高 癌症患者和照顾者对患者ACP的参与度，ACP讨论的存在，完成 广告，以及接受目标一致的护理。本研究的目标是：(1)改进和现场测试移动通信设备 使用迭代设计方法的应用程序干预(PACT)、“大声思考”练习和可用性 协议；(2)评估协议的可行性、可接受性、可用性、满意度和用户参与度 在晚期癌症患者及其照顾者中进行干预；(3)检验该方案的初步疗效 对患者和护理人员在ACP中的参与度进行干预，记录ACP对话，以及 患者完成ADS(主要结果)；患者和照顾者感受到的社会支持和 家庭功能以及患者接受目标一致的护理(次要结果)；以及(4)评估 在干预后访谈中处理措施。为了实现这些目标，我们将从以下方面收集反馈 晚期癌症患者(n=10)、照顾者(n=10)和提供者(n=10)改善和完善 干预原型。接下来，我们将使用两组患者-护理者二元组进行迭代现场测试 (n=15个/组)以改进移动应用程序。然后，我们将n=100名患者-护理者二元组随机分配到 干预组和n=100对应于对照组(常规护理)，并在基线时评估结果 并在干预后3个月和6个月确定可行性、可接受性、可用性、满意度、用户 参与度和干预的初步效果。最后，我们将进行简短的干预后 采访部分患者(n=15)和照顾者(n=15)，以了解使用PACT的过程 申请。基于决策科学的成熟理论，这个被提议的项目具有新颖性。 利用移动医疗技术将亲人整合到患者的ACP决策中。

PROJECT SUMMARY/ABSTRACT Engagement in advance care planning (ACP), which includes having end-of-life (EoL) conversations and completing advance directives (ADs) (e.g., living will, health care proxy), has been shown to improve the quality of care and reduce suffering at the end of life. However, less than half of advanced cancer patients engage in ACP or complete ADs. One commonly overlooked barrier to ACP engagement and AD completion is a lack of acknowledgment that the majority of cancer patients report ACP as a social process in which they want to engage multiple loved ones and family members in their decision-making process. Dr. Shen’s work, in collaboration with her Co-Investigator Dr. Prigerson, suggests that patients frequently report involvement of family members as a critical concern and need for engaging in ACP and that 70.7% report their EoL care treatment preferences being shaped around concerns about their family members. Based on this pilot work and prior work indicating a patient preference to engage in ACP as a social process, this study aims to develop and pilot test a mobile application [Planning Advance Care Together (PACT)] designed to improve advanced cancer patients’ and caregivers’ engagement in patients’ ACP, presence of ACP discussions, completion of ADs, and receipt of goal-concordant care. The goals of this study are to: (1) refine and field-test a mobile application intervention (PACT) using an iterative design approach, “Think Aloud” exercises, and usability protocols; (2) evaluate the feasibility, acceptability, usability, satisfaction, and user engagement of the intervention among advanced cancer patients and their caregivers; (3) test the preliminary efficacy of the intervention on patients’ and caregivers’ level of engagement in ACP, documented ACP conversations, and patients’ completion of ADs (primary outcomes); and patients’ and caregivers’ perceived social support and family functioning as well as patients’ receipt of goal-concordant care (secondary outcomes); and (4) evaluate process measures in a post-intervention interview. To meet these goals, we will collect feedback from advanced cancer patients (n=10), caregivers (n=10), and providers (n=10) to improve and refine the intervention prototype. Next, we will conduct iterative field-testing with two sets of patient-caregiver dyads (n=15 per group) to refine the mobile application. Then, we will randomize n=100 patient-caregiver dyads to the intervention group and n=100 dyads to the control group (usual care) and assess outcomes at baseline and 3 and 6 months post-intervention to determine the feasibility, acceptability, usability, satisfaction, user engagement, and preliminary efficacy of the intervention. Finally, we will conduct a brief post-intervention interview with a subset of patients (n=15) and caregivers (n=15) to understand processes of using the PACT application. Grounded in established theories of decision-making science, the proposed project takes the novel approach of utilizing mobile health technology to integrate loved ones into patients’ ACP decision-making.