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个项目摘要/摘要 2尽管最近的癌症护理进展最近进展，但许多癌症患者最终会因癌症而死亡 3是美国男性和女性的第二大死亡原因，因此，许多癌症患者将 4最终要计划生命的终止需求。迄今为止，大多数干预措施已集中 5仅在协助癌症患者进行预先护理计划中，忽略了大量其他任务 6名患者必须在生命结束之前完成工作。大多数患者报告重要的是 7对他们准备生命的终结，他们最多的不仅是预先护理计划，而且还可以解决情感， 8关系和精神问题；不是家人的伯恩，而是要井井有条。 9尽管患者必须在生命终结之前必须完成大量的任务，但仍有 10个非常有限的工具或资源，可以轻松地引导患者完成此过程。我们提出的基于Web的程序 11利用动机作为框架的目标理论的干预措施旨在指导患者 12通过所有必要的任务，全面计划生命的尽头，易于遵循清单 13有帮助和有关如何完成每个任务的明确详细信息。这项研究的目标是：（1）现场测试 14使用“大声思考”练习，可用性测试的癌症患者基于网络的计划干预 15个协议以及一种迭代设计方法，（2）评估可行性，可接受性，可用性，满意度， 16癌症中基于Web程序的最终版本的用户参与度以及初步效率 17名患者可以提高患者在生命计划结束时的参与程度（跨越项目的清单 18生命计划领域的终结）；患者的痛苦和情感，财务，社会和精神福祉。到 19符合这些目标，我们将根据n = 10名癌症患者的利益相关者反馈和 20 n = 10名护理人员，以完善基于Web的程序。接下来，我们将在A n = 15名晚期癌症患者 21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 22干预修改版本的参与。最后，我们将将n = 50例癌症患者随机 23干预组和n = 50例对照组的癌症患者（通常的护理）和评估结果 干预后24基线和4周，以确定干预的初步效率。接地 25动机的目标制定理论，拟议的研究采用了使用数字的新方法 26个健康平台（例如，基于Web的程序），以全面的生命综合方法为患者提供帮助 27计划。成功完成拟议的研究后，我们希望我们的贡献是一个完全 28开发了针对癌症患者量身定制的干预措施，这些干预措施表现出可行性，可接受性， 29满意度，以及改善全面临终护理计划中参与度的潜在有效性。