Few patients with kidney cancer who meet evaluation criteria receive genetic counseling
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NASHVILLE, Tenn. — Fewer than one in 20 patients with kidney cancer who meet guidelines for genetic evaluation received genetic counseling, according to findings presented at International Kidney Cancer Symposium: North America.
Individuals of Hispanic ancestry or racial minority groups appeared significantly less likely to undergo genetic evaluation, findings showed.
“The numbers were surprising,” researcher Elizaveta Makarova, a third-year medical student at Penn State College of Medicine, told Healio. “The two diagnostic criteria we looked at — early onset and bilateral disease — are well known criteria, so there may be other barriers such as access, insurance or financial barriers.”
National Comprehensive Cancer Network and American Urological Association guidelines recommend patients with early-onset bilateral or multifocal kidney cancer undergo genetic evaluation regardless of family or personal history.
“Finding these pathogenic germline variants has direct effects on how we treat patients, as well as how we care for at-risk family members,” Makarova said.
Researchers aimed to determine the rate at which patients with early onset and bilateral kidney cancer who met genetic referral guidelines received genetic evaluations. They also sought to identify factors associated with genetic referral among patients who met guidelines.
Makarova and colleagues used the TriNetX database — a health research network that provides access to de-identified patient electronic health records — to identify 1,690 adults treated at Penn State Health and an additional 101,809 adults treated at 60 other U.S. Collaborative Network institutions.
All patients received a diagnosis of bilateral kidney cancer between Jan. 1, 2017, and Jan. 1, 2022, and they all were aged 46 years or younger at diagnosis.
The Penn State and U.S. Collaborative Network cohorts appeared comparable with regard to age (mean age, 64 years for both), sex (male, 64% vs. 62%), early age of onset (11% vs. 10%) and bilateral kidney cancer (8% vs. 7%). However, the Penn State cohort had a higher percentage of white (87% vs. 72%) and non-Hispanic/non-Latino individuals (93% vs. 65%).
Researchers used CPT codes to determine rates of genetic counseling and genetic testing.
A comparable percentage of patients in the Penn State and U.S. Collaborative Network cohorts met referral criteria for genetic evaluation (18% vs. 16%); however, a higher percentage in the Penn State cohort received genetic counseling (17% vs. 4%) and underwent genetic testing (3% vs. 1%).
A higher percentage of patients with early onset kidney cancer than bilateral kidney cancer underwent genetic evaluation (Penn State cohort, 22% vs. 7%; P = .0002; U.S. Collaborative Network, 4% vs. 3%; P = .0007).
Researchers identified several factors significantly associated with higher rates of genetic evaluation in the national cohort. They included younger age at diagnosis, female sex, white race and non-Hispanic ethnicity.
The findings reveal significant underutilization and disparities in genetic evaluation among patients with kidney cancer, highlighting limited access to equitable precision oncology, Makarova and colleagues concluded.
“Across the nation, people aren’t getting the care they need, and those who are not receiving it are more likely to be of a racial minority or Hispanic background,” Makarova told Healio.
Makarova and colleagues plan to conduct chart reviews of patients who were referred to genetic counseling in hopes of identifying potential barriers and potentially identifying strategies to make genetic evaluation more equitable.
“This is definitely an area that requires more research,” Makarova said. “Maybe there are systemic changes that need to be made because, not only are patients being affected, but so are their family members.”
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Makarova E, et al. Abstract 13. Presented at: IKCS: North America; Nov. 9-11, 2023; Nashville, Tenn.
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