Gaps in cancer patients' understanding of genomic testing

By Megan Brooks

NEW YORK (Reuters Health) - 3/9/2019

Most cancer patients who participate in biomarker-driven clinical trials don't understand the genomic test results they get, according to a pilot study conducted under the Lung Cancer Master Protocol (Lung-MAP).

"Given the public conversation about precision medicine, and the sharp increase in biomarker-driven cancer clinical trials, it's clear that a lot of people don't really understand these complex trials and the testing that drives them," Dr. Joshua Roth of the Fred Hutchinson Cancer Research Center, in Seattle, said in a news release.

"We need to learn more about the public's knowledge gaps so we can fill them," added Dr. Roth, who presented the research September 9 at the World Conference on Lung Cancer in Barcelona.

Lung-MAP is the first lung-cancer precision-medicine trial supported by the National Cancer Institute (NCI). Dr. Roth and his associates gauged patient knowledge and expectations regarding genomic test results in 123 patients (median age, 68; 61% men) with non-small-cell lung cancer participating in Lung-MAP. The vast majority were white, and 22% had at least a four-year college degree.

In a telephone survey, the researchers found that 82.9% of participants somewhat or strongly agreed that they received enough information about their tests to understand the benefits of enrolling in the trial.

Also, 73.2% somewhat or strongly agreed they had been adequately informed about enrollment risks. In addition, 89.2% believed the test results would guide selection of their cancer treatment.

In Lung-MAP, patients receive somatic testing of mutated cells found in their cancer tumor but not germline testing for inherited mutations. The survey asked patients about both kinds of tests.

Only 9% correctly knew that somatic testing could not predict if a family member was at increased risk of developing cancer. And only 12% correctly knew that their results can't predict their own increased risk of getting other diseases.

In an email to Reuters Health, Dr. Roth said gathering this data is "important" because biomarker-driven clinical trials are being used more often.

"However, because the studies involve testing for multiple biomarkers and often have multiple sub-studies, there is considerable potential for misunderstanding," he added. "We hypothesized that there could be deficits in patient knowledge and misalignment between patients' expected uses/benefits of genomic testing in the study versus actual uses/benefits of the testing."

Looking ahead, Dr. Roth said, "We need to conduct follow-up studies to establish the best strategies to improve patient knowledge of return of genomic results and study design in these biomarker-driven clinical trials. However, several potential interventions that come to mind are: 1) more intensive pre-consent discussions with study physicians/staff, 2) enhanced explanation of return of genomic results facts and/or better graphics to convey study designs in informed consent forms, 3) Apps or online tools to serve as quick reference when questions arise about return of genomic results and/or study design. We're in the process of planning a follow-up study that will assess if strategies like these do reduce the knowledge deficits we reported in our study."


World Conference on Lung Cancer 2019.

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