Black women at high risk of breast cancer face a variety of barriers that may prevent them from receiving care that could prevent cancer and increase their chances of survival if they develop the disease, new research has found.
A study by Ohio State University researchers provides insight into factors that contribute to racial disparities in the use of preventive measures, including genetic testing, prophylactic mastectomies and breast cancer prevention drugs.
In the new study, which appears today (March 1, 2023) in the journal PLUS ONEresearchers interviewed 20 black women and 30 white women at high risk of breast cancer to better understand racial differences in the decision-making process that had not previously been well studied.
Among their findings: Black women may be less focused on breast cancer risk as an issue that needs to be addressed proactively, may be less likely to have information to help them make decisions about prevention, and face more limitations when it comes to making and implementing health care decisions.
We must recognize that the personal, interpersonal, and social dynamics that Black women experience that impact their ability to cope with risk are complex and multi-layered and must be taken into account if we are to empower people to do something at your own risk.”
Tasleem Padamsee, lead author of the study and an assistant professor at Ohio State’s College of Public Health
Women with a strong family history of breast cancer, genetic predisposition to the disease, or other risk factors may face a 20% to 80% risk of developing the disease in their lifetime, but can cut that risk in half or more by using preventive measures. therapies, research has shown. Black women in the US are diagnosed with breast cancer at about the same rate as white women, albeit at younger ages and later stages of the disease, and with higher breast cancer death rates.
“I came away from those conversations with the feeling that a lot of these women have been through terrible things with cancer over and over again, and that they just have this overwhelming feeling that cancer is this thing that comes at you, turns your life upside down and the lives of everyone around you.” and it’s up to God what happens from there,” said Padamsee, who is a member of Ohio State University’s Cancer Control Research Program.
“Because we’re at a cutting-edge cancer center, we have ways and we’re discovering new ways to prevent passageway disease and -; if we cannot -; to catch it earlier when the prognosis is much better. And we want all high-risk women to have these benefits.”
The researchers found several differences based on race, all of which pointed to potentially worse outcomes for high-risk black women.
Overall, black women in the study described feeling less prepared and equipped to consider and manage risk and less informed about their options. They also report that they face more barriers to using these options and have less access to detailed information to help them make decisions about risk management.
Previous research using data from the same interviews with this group of women found that experiences with family members profoundly influenced their own risk perceptions and prevention options. Although black women generally reported having more intimate experiences with family members who had cancer, that didn’t seem to correlate with awareness of measures they could take to protect themselves, Padamsey said. .
Black women in the study were more likely to describe the cancers as a collective group of diseases for which they have an equally high risk, rather than recognizing a specific predisposition to breast cancer. Women who thought this way generally did not believe that anything specific could be done to prevent their increased risk, instead viewing a healthy lifestyle and regular health checkups as their only tools to reduce their risk .
Many white women in the study, who were more likely to use preventive drugs, such as tamoxifen, or have prophylactic mastectomies, told the researchers that they thought they were at particular risk of breast cancer and that they were very worried about its effects on them and their families.
In contrast, black women in the study who worried about their cancer risk were more likely to talk about their faith.
“We’re just a really spiritual family, we believe in God. … I trust in God that everything will be okay,” said one of the middle-aged black women interviewed for the study.
While less anxiety and a stronger spiritual connection may have benefits for black women’s mental health, it may also serve as a barrier to seeking out risk management options, Padamsee said.
Black women in the study were also more likely to describe other priorities in their lives -; including family and work demands and other health issues -; which were in first place. About 20 percent of white women in the study had major health problems other than a high risk of breast cancer, compared with 40 percent of black women.
Access to care from specialists, including genetic counselors, was also uneven. About 15% of black women reported accessing specialists, compared to 70% of white women.
This discrepancy likely has a significant impact on another key finding -; that black women were less likely to know about preventive measures and much less likely to undergo genetic testing even when they had heard about it.
Black women’s ability to manage breast cancer risk is also more significantly affected by financial barriers, the study found. Of the black women in the study, 40 percent experienced a period without insurance, compared to just 3 percent of white women. And 40 percent of black women also described significant financial difficulties in dealing with health challenges, compared to 3 percent of white women.
These new findings could provide a foundation for building equity in health care, Padamsee said. Among the possibilities she suggests: Find better ways to acknowledge and include patients’ spirituality and religious perspectives in discussions about prevention, ensure women have access to good insurance coverage or other ways to pay for specialty care, and improve of training for primary care physicians, who are often the only source of medical advice for high-risk black women.
“There’s a lot of hand-waving when it comes to health equity issues and discrimination and disadvantage in general,” she said. “One of the things that’s really important in working with equity is that we have clear documentation of where the differences are and where they’re coming from, and this study helps ensure that.”
Other Ohio State researchers who worked on the study were Anna Muraveva, Megan Hills, Celia Wills and Electra Paskett.
Padamsee, TJ, and others. (2023) Racial disparities in prevention decision-making among US women at high risk for breast cancer: a qualitative study. PLUS ONE. doi.org/10.1371/journal.pone.0278742.