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

1 .项目摘要/摘要

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.