Study: Gaps in information about breast cancer risk and prevention impact African American women


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African American women who are at high risk for breast cancer

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Checked People with a genetic mutation linked to cancer risk

Checked Previvors

Checked Women under 45

Checked Women over 45

Checked Special populations: African American women at high-risk


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A study showed that African American women with increased breast cancer risk experienced greater burdens in obtaining information at each step compared to white women. Racial differences in preventive choices correlated with differences in information and provider access. (3/14/19)

Contents

At a glance Questions for your doctor
Findings     In-depth                 
Clinical trials Limitations
Guidelines Resources


STUDY AT A GLANCE

This study is about:

How African American and white women with a higher risk of breast cancer navigate their risk-management options.

1) Understanding how high-risk women make decisions about their health care and how that impacts their risk-management choices.

2) Whether African American women and white women differ in their access to information and interactions that support their health care decisions.

Why is this study important?

Having complete information about possible risk-reducing options allows people to make more informed choices and may impact health outcomes. Understanding differences in access to information can help develop better ways to overcome these disparities.

Study findings: 

Researchers concluded that decision making occurred in 3 chronological steps:

            1) Personal perception of breast cancer risk and prevention.

            2) General information about managing breast cancer risk.

            3) Specific information about risk-management options.

  • African American women had different experiences than white women at each information gathering step prior to making decisions about risk-management choices for breast cancer.
  • Compared to white women, African American women experienced greater burdens in obtaining information at each step.
  • The rate at which primary care physicians referred women to a specialist or provided breast cancer-specific information differed between white and African American participants:
    • 52% of white women were offered specialist referrals or specific risk-management information. They were more likely to be told about all preventive options or referred to a breast cancer specialist.
      • 70% of white women had seen at least one genetics, breast, or cancer specialist about their breast cancer risk.
    • 30% of African American women were offered specialist referrals or specific risk management information. Recommendations for them were most often limited to starting mammograms early.
      • 15% of African American participants had seen a genetics, breast, or cancer specialist.
      • African American women were more likely to rely on primary care providers for all of their breast cancer information.

What does this mean for me?

If you have a family history or a personal history of breast cancer, you may want to consider genetic testing. A genetic counselor or other genetics expert can help you determine whether genetic testing is right for you. Knowing your particular breast cancer risk is important information to have in making choices about preventive measures.

If you are at high risk for breast cancer, consider talking to a specialist (genetic counselor, breast oncologist, nurse navigator) who can provide information specific to your situation.  A range of options are available, including enhanced surveillance, risk-reducing surgeries, and chemoprevention.  Ask your health care providers what preventive options are available to you and which might best fit your circumstances.

Share your thoughts on this XRAYS article by taking our brief survey.

Expert Guidelines

The National Comprehensive Cancer Network is a consortium of experts in cancer and genetics. They publish consensus guidelines for genetic testing for inherited mutations that increase cancer risk. Their guidelines for genetic testing for people diagnosed with breast cancer include:

  • breast cancer of any type (including ductal carcinoma in situ or DCIS) diagnosed before age 50 
  • breast cancer in both breasts or a second breast cancer in the same breast
  • triple-negative (ER-/PR-/Her2-) breast cancer before age 60
  • Ashkenazi (Eastern European) Jewish ethnicity
  • relatives with breast, ovarian, pancreatic, prostate or melanoma cancer
  • men with breast cancer

For people with HER2-negative, metastatic breast cancer, NCCN recommends BRCA testing before starting on chemotherapy to see if there may be benefit from treatment with a PARP inhibitor.

According to NCCN, cancer risk assessment and genetic counseling is highly recommended before genetic testing is offered (pre-test counseling) and after results are disclosed (post-test counseling). A genetic counselor, medical geneticist, oncologist, surgeon, oncology nurse, or other health professional with expertise and experience in cancer genetics should be involved early in the counseling of patients.

Questions To Ask Your Health Care Provider

  • Am I a candidate for genetic testing? If so, how do I get tested?
  • How do I consult a specialist about my breast cancer risk?
  • What preventive options are available to me for reducing my risk of breast cancer?
  • What are the pros and cons of different risk-reducing choices?

Open Clinical Trials

The Daughter Sister Mother Project (The Ohio State University) seeks Latina and Asian American women at high risk for breast cancer for a study. 

IN-DEPTH REVIEW OF RESEARCH
Study background:

Breast cancer diagnosis rates are similar among African American and white women in the U.S. However, African Americans are more likely to be diagnosed with more advanced or more aggressive cancers. Despite similar diagnosis rates, breast cancer mortality in this study was 41% higher among African American women than among white women (29.2 deaths per 100,000 among black women vs 20.6 deaths per 100,000 among white women).

Women are defined as having high risk of breast cancer because of age, family history and/or a known genetic mutation. Some reports indicate that African American and white women have similar rates of mutations in breast cancer genes (John, et al. 2007 and Kurian 2010) while others indicate that there may be slightly more BRCA mutations among African American women. These rates do not account for all of the differences in mortality.

Women at higher risk for breast cancer have several possible preventive options. From least aggressive to most aggressive, these are:

  • enhanced surveillance : earlier and more frequent mammograms and breast MRIs.
  • chemoprevention: taking a medication, e.g., tamoxifen, raloxifen, or an aromatase inhibitor to reduce the chance of breast cancer.
  • risk-reducing mastectomy: surgical removal of breast tissue.
  • risk-reducing oophorectomy: surgical removal of the ovaries and fallopian tubes.

While it is not a preventive option, genetic testing can greatly inform preventive choices. Women who have mutations in breast cancer-related genes are at greater risk of breast cancer, as well as ovarian and other cancers.

Choosing or rejecting these preventive options requires that healthy women are aware of them. Women need sufficient information about the pros and cons of each option and understand their personal risk to make informed decisions. Confidence in that information, interactions with health care providers, social support and financial capacity all factor into these decisions (Padamsee, et al, 2017).  Women must first have a general base of information about breast cancer risk, and perceive it and prevention as important issues if they are to be motivated to pursue more specific information.

Racial differences in uptake and knowledge of risk-reducing options have been observed. Multiple studies have shown that African American women are less likely to participate in genetic counseling and testing than white women; they are also less likely to know about risk factors for breast cancer.

Researchers of this study wanted to know:

1) how high-risk African American women make decisions about their health care and how that impacts their risk management choices.

2) whether African American women differ from white women in their access to information and interactions that support their health care decisions.

Populations looked at in this study:

50 undiagnosed women (20 African American women and 30 white women) with a known increased risk of breast cancer were recruited from clinics at Ohio State University.

Research design:

Researchers interviewed participants about their experiences with cancer risk, risk-management behavior, and their decision-making process. Interviews were transcribed and analyzed for theme by at least two analysts. Participants were asked questions in reverse chronological order: initially about their risk management decisions and then about prior issues or factors that contributed to their decisions.

Study findings:

  • Researchers concluded that decision making occurred in 3 chronological steps:

1.   Personal perception of breast cancer risk and prevention.

2.   General information about managing breast cancer risk.

3.   Specific information about risk management options.

  • African American women had different experiences from white women at each information-gathering step prior to making decisions about breast cancer risk-management choices.
  • African American women experienced greater burdens in obtaining information at each step compared to white women.

Note: Researchers used data collection methods that started by asking women questions in a reverse chronological order: initially about their risk management decisions, then about prior specific issues or factors that contributed to their decisions, and then about general perceptions about breast cancer and risk. For clarity, issues are presented here in the chronological order experienced by the participants.

General information gathering:

Gathering general information is necessary step in understanding risk and risk-management choices. A general understanding of cancer risk and prevention needs to occur before an individual can fully appreciate her specific risk information or preventive options.

In this study:

  • The majority of women in both racial groups reported that primary care physicians did not offer information about personal risk or prevention. Therefore, access to specialists who were more likely to have specific risk information was needed.
     
  • The rate at which primary care physicians referred women to a specialist (e.g., genetic counselors or breast oncologists) or provided breast cancer-specific information differed between white and African American participants:
     
    • 52% of white women were offered specialist referrals or specific risk management information. They were more likely to be told about all of their preventive options or referred to a breast cancer specialist.
      • 70% of white women had seen at least one genetics, breast or cancer specialist about their breast cancer risk.
         
    • 30% of African American women were offered specialist referrals or specific risk management information. Most often, they were only recommended to start mammograms early.
      • 15% of African American participants had seen a genetics, breast, or cancer specialist.
      • African American women were more likely to rely on primary care providers for all their breast cancer information.

Participants’ comments highlight the lack of referrals to a specialist:

Elise (white, 22)
[The genetic counsellor] went through my whole family history with me…and then she explained to me how the BRCA1 gene works and my chances of inheriting it…And then she told me that if I have inherited it the chances of me developing breast cancer and its link to ovarian cancer…about when I would get tested for the gene and if I should get tested and how I felt about it…[We discussed] my concerns about getting tested…about how knowing that information or not knowing could influence the rest of my life…The [breast oncologist then] talked to me a little bit more about the chances of developing [breast cancer]...I have much more peace now that I’m on [the facility’s] radar as a patient…and they see me every year.

Tanya (African American, 53)
"I’ve had the same family doctor since I was 19, love him—and he said, ‘You know, looking at the family history, let’s just start screening everything here [breast, cervical, and ovarian cancer screening]’ And once a year, we just screen. [Because] my doctor knows, he knows I’m afraid of cancer.”

The study stated: "Although Tanya’s primary doctor focused his attention solely on routine screening and did not offer her information (providing it only when she made specific requests), she described her relationship with him as positive, although he did not offer her information, but provided it only when she made specific requests."

  • Women's trust in their physicians differed by race:
     
    • A third of white women sought second opinions or switched doctors when dissatisfied.
       
    • None of the African American women reported seeking second opinions or switching doctors. Typically, they had a single primary care physician for more than 10 years.
       
  • Some providers refused access to genetic testing or preventive procedures:

Jojo (African American, 25) asked her OB/GYN if she should be tested for BRCA mutations and was told, “The only people who ever come back positive for that test are Jewish ladies.” This is inaccurate. BRCA mutations are found among all racial groups.

Barberette (White, 58) "intensely feared” ovarian cancer and asked repeatedly to have her ovaries removed, even when she was mostly through menopause and about to go under anesthesia for her hysterectomy, but her OB/GYN steadfastly refused to take out ‘healthy ovaries.’”

Access to information greatly affected women's perceptions of their risk and choices

  • The number of information sources available to a woman correlated to her knowledge about her risk-reducing options.

The number of different information sources correlated with participants knowledge about risk-reducing options. Women who were aware of all or most options obtained that information from health care providers or friends and family. Those who were aware of fewer options used online resources, magazines and their primary care physicians. Three African American participants were unaware of their key prevention choices, even though their primary care physicians were their main source of information.

  • Participants’ ability to perceive and fill knowledge gaps were also factors in their understanding of breast cancer risk and preventive options.
     
  • Information avoidance (not wanting to know about their risk or options to reduce it) occurred in both African American women and white women, but the underlying motivations reported were different:
     
    • For interviewed white women, information avoidance was typically reported as a desire to avoid the next steps.
    • For African American participants, information avoidance was typically reported as having more pressing priorities, e.g., other health problems, a sense that the effort would be futile, or the perception that nothing could be done to reduce their risk.
       
  • Perceptions of breast cancer risk and prevention

General perceptions of breast cancer risk and prevention options differed by race.

When asked whether it is possible to alter one’s cancer risk:

  • 80% of white women and 45% of African American women discussed one or more risk-reducing option.
     
  • 50% of white women and 15% of African Americans discussed clinical interventions.
     
  • 65% of African American women and 43% of white women discussed lifestyle methods (changes in diet, exercise, etc).
     
  • 50% of African American women and 33% of white women reported chronic health conditions that took higher priority in their lives than dealing with the risk of a future breast cancer.
     
  • Specific or general sense of cancer risk differed by race: 93% of white women voiced their risk specifically of breast and ovarian cancer, whereas 33% of African American participants voiced a more generalized sense of cancer risk.

Monica (African American, 32)
"Cancer in general has always been a worry, a concern, of mine…so many people are being diagnosed with every type of cancer at this point…cancer in general is just common."


Specific information gathering is the second step in the decision-making process.

To decide whether or not to pursue a preventive option, a woman needs to know her risk and understand available interventions. Genetic testing is commonly the first step in the process; it greatly clarifies a person's risk of breast cancer. Woman who have a genetic mutation in a breast cancer gene have significantly higher lifetime risk of breast cancer than the general population, and therefore preventive options can have a greater impact.

  • Familiarity with genetic testing differed by race:
    • 100% (30) of white women interviewed had heard of genetic testing.
      • 67% (20) had been tested.
         
    • 85% (17 of 20) of African American women interviewed had heard of genetic testing.
      • 18% had been tested (3 of 17 women).
         
  • Attitudes about genetic testing differed by race.
    • White women often reported having a smooth transition from hearing about a relative's cancer, to their health care provider’s recommendation for genetic testing, to actually being tested.
       
    • African American women often reported not feeling ready to have genetic testing, and financial constraints were common.
       
  • Familiarity with risk-reducing surgeries differed by race.
     
    • 93% (28 of 30) of white women had heard of risk-reducing mastectomy (RRM).
    • 70% (14 of 20) of African American women had heard of risk-reducing mastectomy.
      • 90% would consider RRM if they received a positive genetic test, a doctor’s recommendation, or other influencing circumstance.
         
    • 60% (18 of 30) of white women had heard of risk-reducing salpingo-oophorectomy (RRSO).  
      • Of these women, 78% (14 of 18 women) were positively leaning toward this choice.
    • 35% (7 of 20) of African American women had heard of RRSO.
      • 86% (6 of 7) of these women were positively inclined, but considered it a hypothetical option to be considered under a future circumstance.

Kea (African American, 34):

"It’s something I think I might do. I guess I would have to have a conversation…what does [the genetic result] mean and does it need to be done right away or can I try and pop out one kid first?…The alternatives [cancer] seem a lot worse and much scarier and you can always adopt kids…."

  • Fewer women (42%) had heard of chemoprevention. Small numbers of women who were informed made it difficult to reach any definitive conclusion.
    • 57% (17 of 30) of white women were aware of chemoprevention as an option.
    • 20% (4 of 20) of African American women were aware of chemoprevention as an option.

Risk-reducing decisions: the final step

  • Most women chose enhanced surveillance, including increase screening frequency and earlier start of screening.
    • 80% (16 of 20) of African American women chose enhanced surveillance.
    • 77% (23 of 30) of white women chose enhance surveillance.
       
  • More white women chose to undergo genetic testing than African American women:
    • 67% (20 of 30) of white women had genetic testing.
    • 20% (4 of 20) of African American women had genetic testing.
       
  • Among women interviewed, 28% (14 of 50) choose an aggressive prevention method—preventive surgeries and/or chemoprevention:
    • 23% (7 of 30) of white women chose RRSO.
      • 9 of 30 women chose or were leaning toward RRSO.
    • None of the African American women chose or were leaning toward RRSO.
       
    • 13% (4 of 30) of white women chose RRM.
      • 5 white women chose or were leaning toward RRM.
    • None of the African American women chose RRM.
      • 1 African American woman was leaning toward RRM.
         
    • 7% (2 of 30) of white women chose chemoprevention.
      • 3 white women chose or were leaning toward chemoprevention.
    • 5% (1 of 20) of African American women chose chemoprevention.

 Limitations:

  • This study’s major limitation is that it is an interview-based, qualitative study—responses to interviewer questions reflect participants’ memories. Furthermore, the sample size is small.   While the sample size is reasonable for a study of this type and allows for in-depth exploration of individual responses, it may be more biased than a larger sample. A larger sample size or repeated study would be useful to confirm these results.
     
  • Because only African American and white participants were interviewed, these results may not be generalizable to other racial groups.
     
  • Too few women participated to determine how insurance, income, poverty issues and other suspected factors impact decision making about breast cancer risk.
     
  • Health care providers were not interviewed; the study findings do not include their perspectives on patient-provider dynamics.
     
  • Women who participated in this study were motivated to share responses and may not be representative of the population as a whole.
     
  • There were no statistics applied to the differences between African American and white women's responses. It is unclear whether some results are significant or may have differed by chance. Application of statistical analysis would enhance this study greatly. At this point, this data is a set of correlations that are interesting and could be followed up to ensure their validity. 

Conclusions:

Information access is more complex than previously understood. Disparities exist in information access for African American women at every step of the information-gathering process. This is a prime area for intervention to decrease barriers to decision making and subsequent care.

The concept of generalized versus specific risk perception from this study is a new framework for research. Researchers noted that information access and provider access were intertwined and may systematically disadvantage African American women.

African American women in this study reported a need to prioritize other health problems. The authors state:

"Coping with one or more present health conditions reasonably pushes thinking about cancer risk down a woman’s personal priority list. Time, attention, and money are finite, and the need to invest these resources in current or chronic health problems reduces their availability for addressing possible future threats to health. The fact that our African American participants faced more current health problems and devoted fewer resources to risk-management decision making is consistent with racial disparities found in all major illness categories in the USA.”

As in previous studies, primary care physicians described here were relatively unlikely to educate patients about the individual risk or specific prevention options due to lack of knowledge, time, or confidence (Sabatino et al., 2007 and Tan et al., 2013). Specific knowledge was generally conveyed by health care specialists. Lack of access to these specialists clearly impacted decision making in African American women.

The researchers of this study suggest improving initial and continuing education of primary care providers about familial risk, risk-management information, appropriate referral plans, racially-specific risk information and about racial disparities issues in breast cancer care.

Share your thoughts on this XRAYS article by taking our brief survey.

Posted 3/14/19

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