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

1个项目摘要/摘要 尽管癌症治疗最近取得了进展，但许多癌症患者最终还是会死于癌症。 3是美国男性和女性的第二大死因。因此，许多癌症患者会 4最终要为大量的临终关怀需求制定计划。到目前为止，大多数干预措施都集中在 5只注重帮助癌症患者提前做好护理计划，忽视了大量的其他工作 6病人必须在临终前完成安排他们的事务。大多数患者报告说，什么是重要的 7对他们来说，为临终前的准备不仅是提前的护理计划，还包括解决情感问题， 8关系和精神问题；不成为家庭的负担，并安排好他们的财务。 9尽管患者在临终前必须完成的任务压倒性地多，但仍有 10个非常有限的工具或资源来轻松地指导患者完成这一过程。我们建议的基于网络的计划 以动机的目标设定理论为框架的干预措施旨在指导患者 12在一份易于遵循的核对表中完成所有必要的任务，以全面计划生命结束 13在协助和明确说明如何完成每项任务的情况下。本研究的目的是：(1)现场测试 14对癌症患者进行基于网络的项目干预，使用“大声思考”练习，可用性测试 15个协议和迭代设计方法，以及(2)评估可行性、可接受性、可用性、满意度、 16用户参与，以及基于网络的计划在癌症中的最终版本的初步疗效 17名患者提高患者在临终计划中的参与度(已完成项目清单 18临终计划领域)；患者的痛苦以及情感、经济、社会和精神健康。至 19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 20n=10名护理员，以完善基于网络的计划。接下来，我们将招收n=15名晚期癌症患者参加 21干预的公开试验，以评估干预的可行性、可接受性、可用性、满意度和用户 22参与修改后的干预行动。最后，我们将n=50名癌症患者随机分为 23干预组和n=50名癌症患者到对照组(常规护理)，并在 24个基线和干预后4周，确定干预的初步效果。接地气 25动机的目标设定理论，建议的研究采取了利用数字的新方法 26个健康平台(例如，基于网络的计划)，帮助患者采取全面的临终方案 27计划。在成功完成拟议的研究后，我们预计我们的贡献将是 为癌症患者量身定做的28项干预措施，证明了其可行性、可接受性、 29在提高对全面临终关怀规划的参与度方面的满意度和潜在效力。

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.