Communication of cancer biomarker testing results: What patients need.

Abstract

51 Background: As colorectal cancer (CRC) biomarker testing becomes more widespread and important for treatment decisions, understanding testing results can improve patient engagement, shared decision-making, and facilitate clinical trial enrollment. Our experience in the online 12,000+ member CRC community COLONTOWN (CT), suggests that communication of biomarker results to patients is not ideal. To learn more, we surveyed CT members on their biomarker testing experience. Methods: An online survey posted in CT in September 2024 had questions on testing received (what was tested and how), test results experience (communication before testing and after results, patient understanding and resulting impact), suggested provider statements on biomarker results (statements patients prefer) and disease and respondent details. Results: Of 83 respondents, 70% had testing that included at least 3 common CRC biomarkers; the following are results from this group. Until receipt of results, 30% were unaware that biomarker testing was being done, and 56% first reviewed results without a clinician. Only 17% of respondents felt that nothing was lacking in the clinician communication of biomarker testing results. Upon receipt of biomarker test results, respondents’ feelings improved (30%,18%), did not change (63%, 55%) or worsened (7%, 27%) about treatment options and prognosis, respectively. Test results made 51% feel more confident in their care, and reduced stress for 25%, but increased stress for 39%, with 1/3 citing sub-par communication of results as at least partly driving the stress increase. The value of clear communication was evident, as the most appealing sample provider statements on results with no actionable biomarkers included confirmation of proposed treatment plan and clarity on non-actionable biomarkers. Not surprisingly, 58% learned the most about their biomarker results from COLONTOWN. Conclusions: Our survey highlights the gaps in communication of biomarker testing results and provides insights on what may improve them. The perceived value of biomarker test results for patients seem to go beyond actionability as traditionally defined. Context-specific, nuanced communication of “what the results really mean” and a discussion of its impact on patient experience needs to be part of clinician communication of test results. We plan to develop resources to help, and we implore clinicians and testing companies to consider our findings and make changes in how they share test results with patients.