Abstract

As broad biomarker testing is included in clinical guidelines for patients with non-small-cell lung cancer (NSCLC), continued efforts are needed to understand the patient perspective to gauge barriers to access, patient awareness, and educational strategies to improve result comprehension and self-advocacy to ask for biomarker testing as part of a care plan. An online survey was distributed through two patient advocacy networks (LUNGevity Foundation and Patient Advocate Foundation) and a national research panel to identify patients with NSCLC. Survey intention was to understand patient awareness/prevalence of biomarker testing and key attitudes/barriers to access. Data were collected April-June 2020. Descriptive analyses characterize overall responses and sub-analyses categorize the differences between key subgroups. Six focus groups were conducted October-November 2020 to better understand the patient experience, confirm survey results, and explore solutions to identified barriers. Our analysis included 248 patients with NSCLC: 161 from a general population comprised of patients from a national panel and Patient Advocate Foundation, and 87 from LUNGevity. Notable differences within the LUNGevity sample compared to the general patient population (GPP) were: the GPP included more racially diverse patients, lower income patients, and patients on Medicaid or with no health insurance. Patients who were aware of biomarker testing tend to learn about it before treatment begins; however, this is less likely for lower-income patients and those treated at smaller hospitals. Oncologists were the primary source of information for all patients – a minority also use their own Internet research, patient advocacy groups, or provided materials. Of those in the GPP (46%) needed to seek out testing by two or more doctors, compared to 22% of the LUNGevity group. Eleven percent of the LUNGevity group and 35% of the GPP did not discuss biomarker testing or targeted therapies with their care team. Additionally, 60% of those patients in the general group assumed the doctor would address testing with them if it was relevant. Compared to the LUNGevity group, the GPP was less confident asking their oncologist why biomarker testing was not performed. (100% very confident/somewhat confident vs. 56% very confident/somewhat confident). When asked about their testing results, 88% of the LUNGevity group knew their results or knew they were not tested, compared to 52% of the GPP. Of those from the GPP who knew they were tested, 27% were unaware of their results. When discussing results with their care team, 67% of the LUNGevity group and 44% of the GPP indicated they understood the terms being used. Overall, patients who have been tested were more likely to continue to have questions about how their results would impact treatment. Those in the GPP were more likely than those in the LUNGevity group to have additional questions about insurance coverage, ability to pay, frequency of testing, and risks. These results demonstrate that expanded and enhanced patient education and patient-provider communication on biomarker testing is needed. There is a significant divide between the general patient population and those connected to resources of patient advocacy organizations.

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