“What you're hearing from all of us is simplify the language”: A focus group study on biomarker testing in oncology.

Abstract

e13540 Background: In oncology, somatic biomarker testing is increasingly driving treatment decision-making. Exploration of patients’ understanding of, and perspectives on, biomarker testing has been limited, yet these are needed to improve health education and communication about biomarkers. Our objectives were to explore the perspectives of patients with gynecologic cancers on biomarker and genetic testing and to identify factors that influenced their decision-making on testing. Methods: Patients with gynecologic cancer enrolled in the University of Pennsylvania’s Biobank were invited to participate. Of the 82 patients contacted, 7 participated in 3 focus groups in fall 2023. Participants reviewed educational materials (pamphlet, slide set) about biomarker testing based on the Cancer Precision Medicine Commons’ patient education materials, explored understanding and perspectives around biomarker testing, and then discussed barriers and facilitators to testing. Thematic analyses by two researchers were performed using verbatim transcripts. Results: All patients strongly agreed that both genetic and biomarker testing were important after a gynecologic cancer diagnosis and impacted their treatment options. However, patients did not understand what a biomarker was and expressed confusion over terms and testing methods, labeling unknown terms as “jargon.” 85% of participants had received germline genetic testing, and 85% received biomarker testing, with the remaining participants uncertain about testing status. Participants utilized a variety of resources such as the Internet, peer forums, articles on the patient portal, discussions with clinicians, and scientific papers to understand their cancer diagnosis and the role of genetic and biomarker testing. They mentioned fear (i.e., seeing low survival rates for ovarian cancer online as a “death sentence”) and financial circumstances as key barriers to accessing genetic or biomarker testing. Patients desired simple tailored written materials that were relevant from diagnosis to across the disease course. Conclusions: Patients understand the importance of biomarker testing in oncology but reported difficulties understanding existing resources. Current online resources had jargon and induced fear in some participants. Work to develop patient-centered resources on biomarker testing is needed.