Study Explores Comprehension and the Acceptability of a Website for Cancer Patients and Caregivers

Typically, existing decision aids for participation in cancer clinical trials (CCTs) focus on a single treatment option, and do not include information or resources for caregivers. But limited patient awareness and understanding of CCTs could lead, in part, to lack of adequate CCT participation. This is of concern, because clinical trials are essential for the study of cancer treatment.

Web-based decision-aids are helpful, accessible sources of information about cancer and are preferred among cancer patients and cancer survivors. Researchers from the STEM Translational Communication Center at the University of Florida College of Journalism and Communications created a web-based decision aid designed to communicate information about CCTs to patients and caregivers and conducted a study to determine if the website would increase CCT comprehension and, ultimately, participation in CCTs. The study also measured whether evaluations of the website differed between cancer patients and caregivers.

The research team developed the website using information and content from community panels about cancer, and existing, national websites about CCTs, working to ensure readability and accuracy of the site. The website incorporated information about CCTs in multiple formats, including videos, plain text, testimonials, and information from doctors and other healthcare providers. Researchers consulted experts in visual design and included links to other clinical research sites to foster overall credibility.

Survey results were overwhelmingly positive, with 80.9 percent of respondents speaking positively about one or more aspects of the website. Responses were similar for patients and caregivers, with both groups perceiving the website as highly credible and attractive, and indicating that its content was easy to understand and would be moderately effective in terms of helping them make decisions about cancer treatment. Patients and caregivers also responded positively to personal narratives, such as testimonials, notably enhancing perception of website credibility.

Researchers also found that age, eHealth literacy and gender are key factors in how patients and caregivers determine credibility of the website as a decision-making tool. Women, younger users, and those with higher eHealth literacy were more likely to see the website as credible.

Results suggest that such a website may help improve eHealth literacy overall, and that being a proficient, critical consumer of online health information as a patient or as a caregiver positively contributes to the acceptability of a CCT decision-making tool. However, because patients and caregivers may be at different places on the cancer care continuum, the researchers suggest examining and testing the use of audience segmentation strategies to tailor content about CCTs for specific audiences in future studies.

Authors: Elizabeth Flood-Grady, Jordan M. Neil, Samantha R. Paige, Donghee Lee, Rachel E. Damiani, Deaven Hough, Zach Savitsky, Thomas L. George and Janice L. Krieger.

The original research paper, “A Pilot Study Determining Comprehension and the Acceptability of a Cancer Research Study Website for Cancer Patients and Caregivers,” was published in the Journal of Cancer Education, March 7, 2019.

This summary was written by Marie Morganelli, Ph.D.