A comprehensive web-based program to help advanced cancer patients plan for end of life

一个全面的基于网络的计划，帮助晚期癌症患者规划生命终结

• 批准号: 10394748
• 负责人: Jennifer Good
• 金额: $ 25.61万
• 依托单位: PEACEFULLY, INC.
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-03-08 至 2023-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10394748
• 关键词: Address; Advance Care Planning; Advanced Malignant Neoplasm; Agreement; Behavioral; Benchmarking; Burial; Cancer Patient; Caregivers; Caring; Cause of Death; Cessation of life; Computer software; Control Groups; Custom; Data; Development; Dimensions; Disease; Distress; Elderly; Emotional; Enrollment; Event; Exercise; Family; Family Caregiver; Feedback; Goals; Health; Health Technology; Home; Instruction; Intervention; Intervention Trial; Lawyers; Left; Life; Link; Malignant Neoplasms; Market Research; Modification; Motivation; Needs Assessment; Online Systems; Outcome; Palliative Care; Participant; Patient Care; Patients; Personal Satisfaction; Persons; Phase; Process; Protocols documentation; Public Health; Quality of life; Randomized; Reporting; Research; Resources; Secure; Self Efficacy; Services; Testing; Treatment Efficacy; Woman; Work; Writing; base; cancer care; design; digital; digital health; effective intervention; end of life; end of life care; field study; group intervention; health goals; improved; innovation; intervention program; iterative design; loved ones; men; neglect; novel strategies; patient oriented; pilot test; pilot trial; post intervention; preference; programs; satisfaction; social; social health determinants; theories; tool; treatment as usual; usability; user centered design; web-based tool

1 PROJECT SUMMARY/ABSTRACT 2 Despite recent advances in cancer care, many cancer patients will ultimately die from their disease as cancer 3 is the second leading cause of death among men and women in the U.S. As such, many cancer patients will 4 ultimately be left to plan for a multitude of end of life care needs. To date, most interventions have focused 5 solely on assisting cancer patients with their advance care planning, neglecting the large number of other tasks 6 patients must complete to get their affairs in order prior to end of life. Most patients report that what matters 7 most to them in preparing for their end of life is not only advance care planning, but also resolving emotional, 8 relational, and spiritual issues; not being a burden to their family, and having their financial affairs in order. 9 Despite the overwhelming number of tasks that patients have to complete prior to their end of life, there are 10 very limited tools or resources to easily guide patients through this process. Our proposed web-based program 11 intervention, which utilizes the Goal-Setting Theory of Motivation as a framework, is designed to guide patients 12 through all of the necessary tasks needed to comprehensively plan for end of life in a easy to follow checklist 13 with assistance and explicit details on how to complete each task. The goals of this study are to: (1) field-test 14 the web-based program intervention among cancer patients using “Think Aloud” exercises, usability testing 15 protocols, and an iterative design approach and (2) evaluate the feasibility, acceptability, usability, satisfaction, 16 user engagement, and preliminary efficacy of the finalized version of the web-based program among cancer 17 patients to improve patients’ levels of engagement in end of life planning (checklist of completed items across 18 the end of life planning domains); patients’ distress and emotional, financial, social, and spiritual well-being. To 19 meet these goals, we will refine the intervention based on stakeholder feedback from n=10 cancer patients and 20 n=10 caregivers to refine the web-based program. Next, we will enroll n=15 advanced cancer patients in an 21 open trial of the intervention to evaluate the feasibility, acceptability, usability, satisfaction, and user 22 engagement of the modified version of the intervention. Finally, we we will randomize n=50 cancer patients to 23 the intervention group and n=50 cancer patients to the control group (usual care) and assess outcomes at 24 baseline and 4 weeks post-intervention to determine the preliminary efficacy of the intervention. Grounded in 25 the Goal-Setting Theory of Motivation, the proposed research takes the novel approach of utilizing digital 26 health platforms (e.g., web-based program) to assist patients in a comprehensive approach to end of life 27 planning. Upon successful completion of the proposed research, we expect our contribution to be a fully 28 developed and tested intervention tailored to cancer patients that demonstrates feasibility, acceptability, 29 satisfaction, and potential efficacy at improving engagement in comprehensive end-of-life care planning.

1项目概要/摘要 2尽管癌症治疗取得了最新进展，但许多癌症患者最终还是会死于癌症。 3是美国男性和女性死亡的第二大原因，因此，许多癌症患者将 4最终被留下来计划多种临终护理需求。迄今为止，大多数干预措施都侧重于 5只专注于协助癌症患者进行预先护理计划，忽视了大量其他任务 6患者必须在生命结束前完成整理事务。大多数患者报告说， 7最对他们来说，在为自己的生命结束做准备时，不仅要提前做好护理计划，还要解决情绪问题， 8关系和精神问题;不成为家庭的负担，并有自己的财务问题。 9尽管病人在生命结束前必须完成的任务数量巨大， 10非常有限的工具或资源，以方便地引导患者通过这个过程。我们提出的基于网络的计划 11干预，它利用目标设定理论的动机作为一个框架，旨在指导患者 12通过所有必要的任务，需要全面计划寿命结束，在一个易于遵循的清单 13.协助和明确的细节，如何完成每一项任务。本研究的目的是：（1）现场测试 14癌症患者使用“大声思考”练习的基于网络的程序干预，可用性测试 15个方案和迭代设计方法，以及（2）评价可行性、可接受性、可用性、满意度， 16用户参与，以及最终版本的基于网络的程序在癌症中的初步疗效 17名患者，以提高患者参与临终规划的水平（ 18生命规划领域的结束）;病人的痛苦和情感，财务，社会和精神健康。到 为了达到这些目标，我们将根据n=10名癌症患者的利益相关者反馈改进干预措施， 20 n=10护理人员，以完善基于网络的程序。接下来，我们将招募n=15名晚期癌症患者， 21项干预措施的开放试验，以评估可行性、可接受性、可用性、满意度和用户 第22章修改版的介入最后，我们将随机分配n=50名癌症患者， 23例干预组和50例对照组癌症患者（常规护理），并评估 24基线和干预后4周，以确定干预的初步疗效。立足于 25动机的目标设定理论，拟议的研究采取了新的方法，利用数字 26个健康平台（例如，以网络为基础的程序），以帮助患者在一个全面的方法结束生命 27规划在成功完成拟议的研究后，我们希望我们的贡献是一个全面的 28项针对癌症患者开发和测试的干预措施，证明了可行性，可接受性， 29满意度，以及改善全面临终关怀计划参与的潜在功效。