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.

项目摘要/摘要 参与预先护理计划（ACP），其中包括进行寿命末（EOL）对话和 已证明完成预先指令（ADS）（例如，生活意志，医疗保健代理）可以改善 护理质量并减少生命尽头的痛苦。但是，不到一半的晚期癌症患者 参与ACP或完整的广告。 ACP参与度和广告完成的一个通常被忽视的障碍是 缺乏认可，大多数癌症患者将ACP报告为他们的社会过程 想在决策过程中吸引多个亲人和家人。 Shen博士的工作， 与Prigerson博士的共同评估员合作，表明患者经常报告参与 家庭成员是一个关键的问题，需要参与ACP，而70.7％的人报告了他们的EOL护理 治疗偏好是围绕对家人的担忧。基于这项飞行员工作 并表明患者偏爱参与ACP作为社会过程的工作，本研究旨在发展 并试点测试移动应用程序[共同计划提前护理（PACT）]旨在改善先进 癌症患者和护理人员参与患者的ACP，ACP讨论的存在，完成 广告，并收到目标符合护理。这项研究的目标是：（1）改进和现场测试手机 使用迭代设计方法，“大声思考”练习和可用性 协议； （2）评估可行性，可接受性，可用性，满意度和用户参与 晚期癌症患者及其护理人员之间的干预； （3）测试初步效率 干预患者和护理人员参与ACP的水平，记录的ACP对话以及 患者完成广告（主要结果）；以及患者和看护人的感知社会支持和 家庭功能以及患者获得目标符合护理（次要结果）； （4）评估 干预后访谈​​中的过程措施。为了实现这些目标，我们将收集 晚期癌症患者（n = 10），护理人员（n = 10）和提供者（n = 10），以改善和完善 干预原型。接下来，我们将使用两组患者保养者进行迭代现场测试 （每组n = 15）以完善移动应用程序。然后，我们将随机将n = 100名患者保养者二元组为 干预组和n =对照组（通常的护理）和基线评估结果的n = 100个二元组 干预后的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 干预的参与度和初步效率。最后，我们将进行简短的干预后 接受一部分患者（n = 15）和护理人员（n = 15）的访谈，以了解使用该协议的过程 应用。拟议的项目基于既定的决策科学理论，采用了小说 使用移动卫生技术将亲人融入患者的ACP决策的方法。