Evaluation of a tailored website to support interpretation of genetic test results for Lynch Syndrome

Patients find genetic test results hard to interpret. Information about testing colon cancer (CRC) patients for Lynch syndrome (LS) is particularly complex as it involves several laboratory tests and has to be interpreted along with family/ personal health history information. In this study, the example of LS was used to explore methods of presenting information to patients. Specifically, the tailoring of information was compared to the general didactic presentation in a web-based format for communicating genetic test results to patients. Ninety volunteers, aged 50-75, with ability to read and write English and familiarity with using the Internet were recruited from the Osher Lifelong Learning Institute at The University of Utah and through ResearchMatch.org. Healthcare professionals/ students, people with a professional medical background and the University faculty were excluded. This study was a postintervention, two-group randomized controlled trial. For evaluating the website, a vignette of a typical CRC patient being tested for LS was designed and participants were asked to imagine that they were the patient described in the scenario. They were then asked to interpret the test reports and answer a survey. The primary outcome was genetic knowledge based on interpretation of the test results. The other outcomes were task completion (correct/ incorrect), time to complete the task, usability and usefulness of the website. iv The two groups showed no statistically significant difference in total knowledge score, task completion and usefulness outcomes. Inconsistent differences were found between groups for individual knowledge questions. Time data had to be excluded from our analysis as there were inconsistencies in reporting time. Usability was rated significantly higher for the nontailored website. Our study has demonstrated that online tailored communication of genetic test results is possible and effective, although it could not determine conclusively if tailoring is more effective than nontailoring methods for conveying complex genetics-based testing information to patients. Future research on evaluating the website for its usability through cognitive response methods with actual CRC patients is necessary to get more insights into how the users actually process information and clarify these results.