Latinx Patients Highlight Barriers to Tumor Genomic Profiling for Cancer

Latinx patients with cancer had a low rate of tumor genomic profiling (TGP), partially due to structural and cultural barriers, according to findings from a qualitative study presented during the 5th Annual Regional Synergistic Partnership for Enhancing Equity in Cancer Health (SPEECH) Conference and Retreat in Philadelphia, Pennsylvania.¹

Among 19 patients, only 16% had previously undergone TGP. Twenty-six percent of patients had learned about TGP through their doctor and 47% reported having some form of genetic testing. Patients cited low health literacy, medical mistrust, and health insurance complications as potential barriers to TGP.

The Latinx population makes up approximately 18.7% of the total population of the US. Cancer is the leading cause of death among Latinx individuals, accounting for 21% of all fatalities. Although overall cancer incidence rates for Latinx patients have been decreasing, patients in this subgroup tend to be diagnosed for breast, colorectal, prostate, lung, and melanoma cancers at more advanced stages.²

As part of the qualitative study, investigators conducted a total of 6 focus groups, both in-person and online, with cancer patients of Latinx ethnicity. Three groups encompassing 12 patients participated in focus groups conducted in English and 3 groups with a total of 7 patients completed the exercise in Spanish. The focus groups examined patients’ understanding of TGP, cultural beliefs concerning genetics, medical mistrust, and how patients’ perceptions informed their medical decision-making processes.¹

The mean patient age was 52 years (standard deviation, 10), 84% were female, and 42% had a high school education or a GED. Patients also mentioned a lack of accessible Spanish language health information, immigration status/low acculturation, a lack of communication about family health history, and a continued adherence to folk medicine or home remedies as additional barriers to TGP in the Latinx population. The Latinx cultural values of fatalism, machismo, and marianismo can lead to an “old school mentality” that may also hinder TGP, according to patients interviewed as part of the study.

Study authors summarized patients’ feelings on TGP into 4 overview statements: beliefs that insurance and pharmaceutical companies only care about profit over treating patients; primary barriers include insurance coverage and potential financial implications; knowledge is a primary benefit and TGP has the potential to benefit them and their families; and lack of communication about individual and family health history that is closely tied with Latinx cultural values.

Patients also were given the opportunity to make specific suggestions of strategies that would allow them to make better informed decisions concerning TGP. These suggestions included the use of social media, live events, publication of more Spanish language health information, and the promotion of bilingual genetic counselors to increase health literacy in Latinx communities.

The findings from this study will be used to create GenePilotLX, an intervention designed to increase informed TGP decision making in the Latinx patient population.

References

1. Luck CC, Bass SB, Revenson TA, et al. A qualitative investigation of experiences with and perceptions of tumor genomic profiling in Latinx cancer patients. Presented at: 5th Annual Regional Synergistic Partnership for Enhancing Equity in Cancer Health (SPEECH) Conference and Retreat; May 17-18, 2023; Philadelphia, PA. Poster 52.
2. Fejerman L, Ramirez AG, Nápoles AM, Gomez SL, Stern MC. Cancer epidemiology in hispanic populations: what have we learned and where do we need to make progress? Cancer Epidemiol Biomarkers Prev. 2022;31(5):932-941. doi:10.1158/1055-9965.EPI-21-1303