NEW YORK – Ohio State University researchers are undertaking a series of research projects to better understand the racial and systemic barriers patients face in understanding their hereditary breast and ovarian cancer risk information and in using that information to prevent cancer.
Through these projects, the researchers hope to demonstrate an evidence-based need for wider physician training, genetic testing support, and cancer prevention strategies, and advocate for change.
In one such study in this effort, published this month in PLOS One, researchers led by Tasleem Padamsee, an assistant professor at Ohio State's College of Public Health, interviewed Black and white women who are at high risk for developing cancer to identify healthcare access disparities for further research.
The interviews identified disparities in how Black and white women approach decision-making around their cancer risk as well as systemic barriers like cost, insurance coverage, and access to specialists. The researchers interviewed 50 individuals with strong family histories of breast or ovarian cancer: 20 Black women and 30 white women. In these interviews, researchers talked to these women about their cancer history, worries about the disease, faith and spirituality, health practices, financial constraints, interactions with healthcare providers, experiences with genetic testing, and knowledge of cancer prevention strategies.
When it came to genetic testing, researchers found that Black women were more likely to delay or avoid testing to gauge their cancer risk.
In order to determine if a genetic variant detected in an individual is associated with increased cancer risk, other blood relatives, particularly those with cancer, have to be tested. Interviews with study participants illustrated how access barriers can be multi-generational.
A Black woman recounted, for example, that when she pursued getting genetic testing, it was recommended that her cancer-affected mother also get tested to better inform her result. However, out-of-pocket costs prevented her mother from undergoing genetic testing, and the interviewee decided not to "waste the money" getting her own test because she understood her own results could be uninformative without her mother's test results.
"We asked [participants] questions about their family history to figure out their cancer risk level, and based upon that, we know that almost everybody in the study would be a candidate for genetic testing," Padamsee said. "Most of them had heard of genetic testing and knew that a genetic test might tell you something about your cancer risk. But the difference was [in the] actual use of genetic testing; very few of our Black participants had had the genetic testing."
Several Black women interviewed highlighted lack of insurance coverage or out-of-pocket costs as barriers to receiving genetic testing. Black women in the study were also more likely than the white women to have had periods of time when they didn't have insurance, 40 percent versus 3 percent, respectively. More Black women also cited financial difficulties in coping with health issues and were less likely to describe their health insurance as "excellent" or "very good" than white participants.
There was also a disparity in access to genetic counselors or breast or ovarian cancer specialists among the participants. All the women interviewed had contact with a primary care provider (PCP), but only 15 percent of Black women had access to a specialist, compared to 70 percent of white women. As such, Black women were more likely to get information about genetic testing and cancer prevention procedures from a PCP. More than three-quarters of Black women interviewed said their PCP was their main source of information about cancer risk and prevention versus one-third of white women.
As Padamsee pointed out, however, many PCPs may not have the knowledge or expertise to answer questions about cancer risk, even if a patient brings it up in an appointment. Black patients similarly reported in interviews that their PCPs rarely initiated conversations about cancer risk, offered fewer details when asked about cancer risk, and rarely discussed risk-reduction options beyond screening.
"Some PCPs don't feel that they have the training and the expertise to provide that information," Padamsee said. "Their job is to oversee general health conditions and be a navigator to the right kinds of specialists, if needed. [Assessing] cancer risk [requires] a very specialized and complicated set of expertise that PCPs may not have because it's not part of their training as primary care providers."
Also, since PCPs cover many potential health issues in appointments, they simply may not have the time to go in-depth with patients on how to further assess their cancer risk with genetic testing or prevent cancer if they're at high risk, she added.
"When you combine the fact that they don't feel like they're experts on this topic with the fact that they don't feel like they have time to add one more thing, it makes sense that they don't end up bringing up cancer risk very much," Padamsee said, suggesting that physicians' professional societies could make more continuing medical education modules available to PCPs, covering topics like genetic testing and cancer prevention strategies, such as prophylactic chemoprevention, mastectomy, or oophorectomy.
In her lab, Padamsee is building an evidence base that shows the need for more physician training and support for patients navigating cancer risk and prevention options. Her group runs the Daughter, Sister, Mother Project, a research effort to better understand the behaviors and experiences of women at high risk of cancer.
Having identified as part of this effort disparities patients encounter when trying to access cancer risk information through the interview-based study, Padamsee's group is now collecting more quantitative data by surveying a larger cohort. "We initially wanted to learn what issues we need to understand better with the qualitative research and then we can do a survey based on those findings of a lot more people in order to figure out how widespread these issues are," she said.
Padamsee's group is also designing an interventional study that would provide a supportive intervention to high-risk women trying to navigate decision making around their cancer risk. In the future, they also aim to explore these disparities across white, Black, Asian American, and Latino women.
Researchers also want to design solutions to empower women to understand their cancer risk, to have better access to genetic testing and specialists, and to make informed decisions about more aggressive prevention methods, such as surgery or treatment.
"Lots of high-risk people don't know that they're high risk or they don't know there's anything they can do about their risk, and in our research so far, we've documented that happens disproportionately to Black women," Padamsee said. "We have a goal to put additional attention on these groups that we know are systematically disadvantaged. We don't want to implement a solution for something, and then the people who get access to it are the people with the best resources."