Development and refinement of a novel end-of-life planning website for patients with advanced cancer: a mixed methods approach

• Published in: Supportive care in cancer 2023-12, Vol.31 (12), p.695-695, Article 695
• Main Authors: Walsh, Casey A., Good, Jennifer, Ismaiel, Anas, Yarborough, Sarah, Shen, Megan J.
• Format: Article
• Language: English
• Subjects: Behavior modification; Behavior Therapy; Cancer; Cancer patients; Caregivers; Death; Female; Health aspects; Humans; Male; Medicine; Medicine & Public Health; Methods; Middle Aged; Neoplasms - therapy; Nursing; Nursing Research; Oncology; Pain Medicine; Patients; Planning; Rehabilitation Medicine; Research Design; Usability; Usability testing; Women
• ISSN: 0941-4355; 1433-7339; 1433-7339
• DOI: 10.1007/s00520-023-08153-z

Purpose Despite known benefits of planning for end-of-life, no digital tool exists to help patients with advanced cancer and their loved ones plan for death comprehensively. To address this unmet need, we developed a preliminary version of an innovative website to help patients with advanced cancer prepare for end-of-life tasks. Methods Guided by the Obesity-Related Behavioral Intervention Trials (ORBIT) model for behavioral intervention development, patients with advanced cancer ( n  = 10) and their caregivers ( n  = 10) participated in a “Think Aloud” exercise and usability protocols to optimize the end-of-life planning website. The website was iteratively refined throughout the study in collaboration with the partnering company, Peacefully, Inc. Participants also completed the Acceptability E-Scale and System Usability Scale, with a priori benchmarks established for acceptability (scores of ≥ 24 on the Acceptability E-Scale) and usability (scores of ≥ 68 on the System Usability Scale). Results Patients ( N  = 10) and caregivers ( N  = 10) completed usability testing. Patients were majority female (80%), White (100%), and had a mean age of 58 years. Caregivers ( N  = 10) were majority male (60%), spouse/partner (90%), White (90%), and had a mean age of 59 years. For patients, a priori hypotheses were met for both acceptability (mean score of 24.7, SD = 4.35) and usability (mean score of 73.8, SD = 6.15). For caregivers, acceptability was just below the cutoff (mean score of 22.9, SD = 4.07) and usability exceeded the cutoff (mean score of 70.0, SD = 8.42). Overall, patients and caregivers reported high levels of satisfaction and found the website helpful, with specific suggestions for changes (e.g., add more information about information security, improve text legibility). Conclusions The findings from this study will inform modifications to optimize an innovative website to support patients with advanced cancer to prepare holistically for end-of-life tasks.