Black women at high risk of developing breast cancer may face a variety of obstacles keeping them from receiving preventive care that could increase their chances of survival if they did develop the disease, according to a new study published by Padamsee et al in PLOS One.

The new findings provide insights into the factors that contribute to racial disparities in preventive care—including genetic testing, prophylactic mastectomies, and medication to thwart breast cancer.

Background

Women who have a strong family history of breast cancer, genetic predispositions to the disease, or other risk factors can face a 20% to 80% risk of developing breast cancer within their lifetimes—but may be able to cut that risk in half by using preventive therapies. Black women in the United States are diagnosed with breast cancer at about the same rate as White women, although at younger ages, later stages of disease, and with higher breast cancer mortality rates.

“I walked away from these conversations feeling like many of these women have experienced horrible things with cancer over and over again, and that they just have an overriding sense that cancer is this thing that comes at you, upends your life and the life of everyone around you, and it’s up to God what happens from there,” explained Dr. Padamsee. “Being in a cutting-edge cancer center, we have ways—and are finding new ones—to head the disease off…[and] catch it earlier, when the prognosis is much better. [W]e want all high-risk women to have those advantages,” she underscored.

Black Women May Be Less Informed and Less Aware of Preventive Options

In the new study, the researchers interviewed 20 Black women and 30 White women at high risk of developing breast cancer to better understand racial differences in the decision-making process—and found several differences based on race, all of which pointed to potentially worse outcomes for the high-risk Black women. Black women may be less focused on proactively addressing the risk of breast cancer, may less frequently possess information to help guide their decisions about prevention, and may face more constraints when it comes to making and carrying out health-protective decisions.

“We need to recognize that the personal, interpersonal, and social dynamics that Black women are experiencing that influence their ability to cope with their risk are complicated, multilayered, and need to be taken into account if we’re going to empower people to do something about their risk,” emphasized lead study author Tasleem Padamsee, PhD, Assistant Professor of Health Services Management and Policy at The Ohio State University College of Public Health and a member of the Cancer Control Research program at the Comprehensive Cancer Center–Arthur G. James Cancer Hospital and Richard J. Solove Research Institute.

Overall, the Black women who participated in the study described feeling less ready and equipped to consider and cope with their risk, and less informed about their options. They also reported facing more obstacles in taking advantage of those options and having less access to detailed information to help them make decisions about managing their risk.

Previous research using data from the same interviews found that experiences with family members had a profound influence on perceptions of their own risk and prevention options. Though Black women generally reported having more up-close experiences with family members who had cancer, the researchers discovered that they didn’t seem to be aware of measures they might take to protect themselves.

Additionally, the Black women involved in the study were more likely to describe cancers as a collective group of diseases for which they have an equally high risk of developing, rather than recognizing their particular predisposition to breast cancer. Those who held this belief also tended to assume that nothing specific could be done to prevent their increased risk—and viewed a healthy lifestyle and regular health screenings as their sole tools to mitigate risk.

Many White participants who were more inclined to pursue preventive medication—such as tamoxifen—or prophylactic mastectomies told the researchers they perceived themselves to be at an increased risk of breast cancer and that they worried a lot about its impact on them and their families.

In contrast, Black participants who worried about their cancer risk were more likely to talk about their faith. While worrying less and having a stronger spiritual connection could have mental health benefits for Black women, the researchers stressed that this mentality could also serve as a barrier to seeking out risk-management options.

Further, Black women were also more likely to describe other priorities in their lives—including family, work demands, and other health struggles—that they prioritized. About 20% of White women had a major health concern besides the high risk of breast cancer, compared with 40% of the Black women.

There were also inequities in the access to specialist care, including genetic counselors. About 15% of the Black women reported having access to specialists, compared with 70% of the White women.

That disparity likely had a significant influence on another key finding—that Black women were less likely to know about preventive measures and were much less likely to undergo genetic testing, even when they’d heard of it.

The ability for Black women to manage their breast cancer risk may also be significantly impacted by financial barriers. The researchers revealed that compared with just 3% of White participants, 40% of Black participants had experienced a lack of insurance and had significant financial difficulties coping with health challenges.

Conclusions

The researchers highlighted that the new findings could provide a foundation for building greater equity within health-care by finding better ways to acknowledge and incorporate patients’ spirituality and religious perspectives into discussions about prevention, ensuring that women have access to adequate insurance coverage or other ways of paying for specialist care, and improving training for primary care physicians who are often the sole source of medical counsel for Black women at high risk of developing breast cancer. 

“There’s a lot of hand-waving when it comes to talking about health equity problems, and discrimination and disadvantage in general,” Dr. Padamsee noted. “One of the things that’s really important in equity work is that we have clear documentation of where the differences are and where they’re coming from—and this study helps provide that,” she concluded.

Disclosure: For full disclosures of the study authors, visit journals.plos.org.