The importance of clinical trial participation to the advancement of cancer research cannot be overstated. Yet, oncology-focused clinical trials often struggle to enroll sufficient numbers of diverse participants. As a means of disseminating information regarding open and enrolling trials, cancer centers throughout the United States have created clinical trial websites and online applications.
Information published to these publicly available and searchable online resources is typically drawn from scientific databases containing high level, oncology-specific text. This presents a barrier to individuals from the general public, who find cancer clinical trial information online, but cannot comprehend it, and therefore do not act upon it.
A study conducted by the Office of Patient and Public Education at University Hospitals Seidman Cancer Center, Cleveland, Ohio tested whether incorporating brief, plain language study descriptions within online, publicly available clinical trial information, aided user comprehension of basic trial details. An iterative research design was used involving a convenience sample of 217 adult volunteers, from the general public, who were naïve to cancer clinical trials.
A user testing method was applied in which volunteers were asked to read plain language “about this study” cancer trial descriptions and answer questions about; a. the type of cancer being studied, b. the type of treatment being studied, and c. basic inclusion/exclusion criteria (i.e. who can participate in the trial). After one round of testing was completed, plain language trial descriptions were edited based on volunteer feedback and observed comprehension difficulties. A second, and third round of testing, using subsequently edited plain language study descriptions, was conducted with new volunteers, and data compiled regarding comprehension results.
The brief plain language trial descriptions resulted in (on average); a. 95% comprehension of cancer type being studied, b. 70% comprehension of treatment being studied, and c. 87% comprehension of basic inclusion/exclusion criteria. This suggests that plain language trial descriptions can aid general public comprehension of the type of cancer being studied and inclusion criteria. Plain language descriptions were found less effective for comprehension of treatment methods being used. This may be due to volunteer naiveté regarding cancer clinical trials, and the general concept of “treatment”, as well as natural tendency to focus more on the disease condition and less upon the methods being studied to treat it.
This study reinforces the need for easily understandable, plain language to be incorporated into publicly available cancer clinical trial information, to aid general public comprehension of trial basics. Comprehension of basic clinical trial details could, theoretically, encourage users to act upon the information they find online, through various means, such as a call to the cancer center, or speaking to their physician about certain trials. Further study is needed regarding more effective language and/or sentence structure to aid comprehension of treatments being studied.
These findings are described in the article entitled Evaluating the Use of Plain Language in Cancer Clinical Trial Website/App, published in the Journal of Cancer Education. This work was led by Paula L. Schultz from University Hospitals Seidman Cancer Center.