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Patients lack understanding of genomic results in Lung-MAP study
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BARCELONA — Many participants in the Lung-MAP biomarker-driven clinical trial lacked understanding of genomic test results despite indicating they had adequate information on the benefits and risks of trial enrollment, according to study results presented at International Association for the Study of Lung Cancer World Conference on Lung Cancer.
“The knowledge gaps that we show relate to general return of genomic results, issues that I would expect to impact most studies that involve return of genomic test results,” Joshua A. Roth, PhD, MHA, assistant member of Hutchinson Institute for Cancer Research Outcomes at Fred Hutchinson Cancer Research Center, told HemOnc Today. “I would like to conduct a cross-trial comparison of knowledge about return of genomic results as a next study. We will start planning a study like that in the coming months.”
Roth and colleagues assessed knowledge and expectations about the return of genomic results among 123 participants (median age, 67 years; 61% men; 95.1% white) with non-small cell lung cancer in Lung-MAP, the first large-scale precision medicine lung cancer trial backed by the NCI. A 38-item telephone survey completed by the participants was structured with a five-level scale of responses that ranged from “strongly disagree” to “strongly agree.” Other questions could be answered with “true,” “false” and “don’t know.”
Results showed that 82.9% of participants somewhat or strongly agreed that they had enough information about the testing in Lung-MAP to understand the benefits of enrolling, and 73.2% strongly or somewhat agreed they had been adequately informed about enrollment risks.
Among the subgroup of participants who somewhat or strongly agreed they understood the benefits of the trial, 89.2% correctly believed the test results would guide selection of their cancer treatment.
However, only 8.8% of participants correctly believed the somatic testing in the study could not predict increased risk for cancer among family members, with 40.2% answering “don’t know.”
Additionally, only 11.8% of participants correctly believed it was false that the results would tell them about their risk for developing diseases other than cancer. More than one-third (38.2%) responded that they did not know the answer.
“Our findings show major knowledge gaps regardless of response — indicating that more nuanced discussion of return of genomic results is probably needed to detect knowledge deficits,” Roth said. “To address this issue, I would hypothesize that it will take a combination of more intensive explanation from study physicians/staff at the time of study informed consent, as well as provision of written documents, apps or other technology that can serve as a reference when patients have questions about return of genomic results. We would also like to evaluate the effects of these approaches on knowledge about return of genomic results in a follow-up study.” – by John DeRosier
Reference:
Roth JA, et al. Abstract OA07.06. Presented at: International Association for the Study of Lung Cancer World Conference on Lung Cancer; Sept. 7-10, 2019; Barcelona.
Disclosures: Roth reports no relevant financial disclosures. Please see the abstract for all other authors’ relevant financial disclosures.