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

共同规划预先护理 (PACT) 以提高晚期癌症患者对预先护理规划的参与度

• 批准号: 10693114
• 负责人: Megan Johnson Shen
• 金额: $ 32.83万
• 依托单位: FRED HUTCHINSON CANCER CENTER
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-08 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10693114
• 关键词: Address; Advance Care Planning; Advance Directives; Advanced Malignant Neoplasm; Benchmarking; Cancer Patient; Caregivers; Caring; Collaborations; Control Groups; Decision Making; Decision Theory; Development; Documentation; Exercise; Family; Family Caregiver; Family member; Feedback; Funding; Goals; Health Technology; Healthcare; Individual; Intervention; Interview; Living Wills; Malignant Neoplasms; Mobile Health Application; Oncologist; Outcome Assessment; Participant; Patient Care; Patient Education; Patient Preferences; Patients; Process; Process Measure; Protocols documentation; Provider; Proxy; Public Health; Quality of Care; Quality of life; Randomized; Reporting; Research; Research Personnel; Science; Shapes; Social Environment; Social Network; Social Planning; Social Workers; Social support; Structure; Surgeon; Technology; Testing; Treatment Efficacy; United States Centers for Medicare and Medicaid Services; Work; care preference; cohort; college; coping; design; effective intervention; end of life; end of life care; field study; group intervention; health goals; improved; informant; intervention refinement; iterative design; loved ones; mHealth; meetings; mobile application; neglect; novel strategies; patient engagement; patient subsets; pilot test; pilot trial; post intervention; preference; primary outcome; prototype; satisfaction; secondary outcome; social; social relationships; standard care; treatment as usual; usability

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.

项目总结/摘要 参与预先护理计划（ACP），包括进行临终（EoL）对话， 完成预先指示（AD）（例如，生活意愿，医疗保健代理），已被证明可以改善 提高护理质量，减少生命结束时的痛苦。然而，不到一半的晚期癌症患者 参与ACP或完成AD。ACP参与和AD完成的一个通常被忽视的障碍是 缺乏对大多数癌症患者报告ACP是一个社会过程的认识， 希望让多个亲人和家庭成员参与决策过程。沈博士的工作，在 与她的合作研究者Prigerson博士的合作表明，患者经常报告涉及 家庭成员是参与ACP的关键问题和需求，70.7%的人报告他们的EoL护理 治疗偏好是围绕着对家庭成员的关注而形成的。在试点工作的基础上， 和先前的工作表明，患者偏好从事ACP作为一个社会过程，这项研究的目的是发展 并试点测试一个移动的应用程序[共同规划高级护理（PACT）]，旨在提高高级 癌症患者和护理人员参与患者ACP，参与ACP讨论，完成 “安”与“安”，就是“安”与“安”。本研究的目的是：（1）完善和实地测试一个移动的 使用迭代设计方法、“大声思考”练习和可用性的应用干预（PACT） 协议;（2）评估的可行性，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）测试 对患者和护理人员参与ACP的水平进行干预，记录ACP对话，以及 患者完成AD（主要结局）;患者和护理人员感知的社会支持， 家庭功能以及患者接受目标一致性护理（次要结局）;（4）评估 在干预后访谈中进行过程测量。为了实现这些目标，我们将收集以下方面的反馈： 晚期癌症患者（n=10），护理人员（n=10）和供应商（n=10），以改善和完善 干预原型。接下来，我们将对两组患者-护理人员配对进行迭代现场测试 （每组n=15），以完善移动的应用程序。然后，我们将随机分配n=100名患者-护理人员配对， 干预组和对照组（常规护理）的n=100对，并评估基线结果 以及干预后3个月和6个月，以确定可行性、可接受性、可用性、满意度、用户 参与和干预的初步效果。最后，我们将进行简短的事后干预 与患者（n=15）和护理人员（n=15）的子集进行访谈，以了解使用PACT的过程 应用程序.立足于决策科学的既定理论，拟议的项目采取了新颖的 利用移动的医疗技术将亲人纳入患者的ACP决策的方法。