Raising Latina Awareness of Breast Cancer Risk and Prevention Means Understanding Their Cultural Values
Elevar Latina conciencia de riesgo de cáncer de mama y la prevención significa entender sus valores culturales10/21/2013 10:44AM | 7778 views
Dr. Weitzel's multidisciplinary clinical and research program emphasizes the recognition and assessment of people at increased risk for developing cancer because of family cancer history or personal risk factor.
As Hispanics continue their population surge across the U.S., it becomes more and more evident how underserved the community is – whether in business, politics or the media. However, being underserved by the healthcare industry carries higher, often deadly, stakes. For Latinas in particular, there’s one area where we can and should be doing a whole lot more understanding and outreach.
Breast cancer is the most common cancer among Latinas and the leading cause of cancer death. Yet, Latinas receive early detection and screening services far less often than non-Latina whites, and a greater proportion of Latinas are diagnosed with late-stage breast cancer. Furthermore, there is a lack of research on Latinas’ genetic predisposition to breast and ovarian cancer – even though BRCA gene mutations, which bring a significant increase in risk for breast and ovarian cancer, have "high prevalence" among Latinas. In one study, 25% of Latinas with a personal or family history of breast or ovarian cancer had the BRCA gene mutation.
These mutations also result in early age onset, so the disease is already quite advanced when women from underserved Hispanic communities are finally diagnosed. This highlights the importance of – and great need for – more timely and culturally informed early detection and risk reduction services. But insufficient research with Latino populations has hindered the development of culturally-based prevention and treatment efforts and limited the scope of comparative studies of genetic factors and behavioral interventions that influence breast cancer risk and clinical outcomes
To be sure, there are challenges to overcome in these high-risk underserved Hispanic communities. For example, less than 50% of Latinas show up for scheduled genetic cancer risk assessment (GCRA) consultations. One reason is that the time from referral to actual consultation is particularly stressful for Latinas, complete with feelings of fear, intrusive thoughts and a perceived sense of uncertainty about what to expect.
In a preliminary study of 150 patients, we found that many more patients (88%) kept scheduled appointments for consultations when they received a pre-GCRA telephone intervention (adapted from motivational interviewing). Additionally, outcome surveys showed subsequent risk-appropriate screening and prevention behavior.
A proposed project builds on the success of our preliminary studies with a pragmatic, randomized, controlled interventional trial to test the effectiveness of a pre-GCRA telephone intervention for underserved Latinas at high risk for hereditary breast and ovarian cancer. Our aim is to determine that culturally and linguistically appropriate intervention will improve the uptake, preparedness for, and effectiveness of GCRA with high-risk Latinas. Our findings will inform the standard of care relevant to breast cancer prevention using individualized genetic data and culturally competent strategies to boost breast cancer prevention and risk reduction among underserved women.
If we can increase perceived personal control and cancer genetics knowledge, we can begin to reduce anxiety and increase the number of GCRA appointments that are kept, along with knowledge of GCRA purpose and procedures and satisfaction with the GCRA consultation process and experience.
Understanding and Assessing Risk
The genetic cancer risk assessment (GCRA) process includes assessment of personal and family medical history to determine individual cancer risk and the probability of inherited cancer predisposition. It also includes education about the risks, benefits and limitations of genetic testing, interpretation of genetic test results if testing is pursued, risk-appropriate healthcare recommendations, and follow-up recommendations for at-risk family members. Once a deleterious genetic mutation is identified in a family member, testing for the known mutation in other at-risk family members is significantly less costly and highly specific in distinguishing those at high risk from those at average risk for disease.
For Latinas, GCRA could be serving a more prominent role in their decision making process, and providing them with individualized recommendations for cancer screening and risk reduction. As we saw earlier this year with actress and activist Angelina Jolie, quantifying personal and family cancer risk through genetic tests enables patients to choose from a wide range of risk reduction preventative actions and procedures, such as chemoprevention or surgery. It can also motivate individuals to increase self-examinations and check-ups and make healthier lifestyle choices.
As Ms. Jolie rightly pointed out in her New York Times op-ed piece, “My Medical Choice,” compared to her, low-income, underinsured, and minority individuals have limited access to GCRA services. Facilitating access for high-risk, underserved Latinas who have a disproportionate burden of cancer and risk is vital if we are to address health care disparities in the community and begin to reduce their breast cancer incidence and mortality rates.
Despite the potential benefits of GCRA, there are barriers or tension points with the community that must be overcome before we can hope to expose Latinas to genetic testing for cancer risk – beginning with their lack of knowledge about GCRA and unfamiliarity with the procedures involved. National data reveal that only 19.1% of Hispanics are aware of genetic testing for cancer risk, compared to 42% of the general U.S. population.
Those who decline the opportunity for BRCA gene testing have less breast cancer genetics knowledge than those who undergo such testing. This lack of knowledge and preparedness for GCRA can heighten the anxiety Latinas have about genetic consultation and testing. Conversely, reduced uncertainty and anxiety about breast cancer is one of the major psychological benefits of GCRA.
Although there is little data on ethnic minority patients who are considering GCRA, those who fail to participate report greater anticipation and negative emotional responses to testing and more concern about stigmatization than those who agree to participate. Among Hispanics, those who are highly-acculturated are better able to see the perceived benefits of testing and pose fewer barriers to testing.
Understanding Latino Cultural Values
The growing ethnically diverse populations in the U.S. highlight the need for culturally and linguistically competent GCRA services to facilitate effective, individualized risk-reducing behaviors. Several Latino cultural values warrant particular focus in the GCRA context.
Studies show that Latinas are more likely than non-Latina whites to fear
cancer and to have fatalistic attitudes about it. It is a matter of debate,
however, whether such fatalistic attitudes deter cancer prevention. This fatalismo
(fatalism) encompasses complex belief systems that integrate notions about
heredity and legacy, topics of central importance to the community.
Additional cultural values relevant to GCRA include:
Familialism– the significance of the family to the individual;
Collectivism – the importance of friends and extended family in helping to solve a problem;
Simpatía – the need for smooth interpersonal relationships;
Personalismo – the preference for relationships with members of the in-group;
Respeto – the need to maintain one’s personal integrity and allow for face-saving strategies;
Power distance – the need to treat certain persons, such as the powerful, elderly, or educated, with deference.
Cancer risk genetic counselors are specifically trained to establish a relationship of trust through verbal, physical, and conversational cues. To facilitate effective communication, counselors assume the pivotal role of “trusted messengers” who are familiar with the culture. The proposed study utilizes culturally competent cancer risk counseling techniques, and combines them with novel, complementary approaches from adapted motivational interviewing to develop telephone intervention broadly aimed at increasing the uptake and effectiveness of the GCRA process.
A few final notes will highlight the significance of the GCRA process and why it is so important to promote participation amongst Latinas:
The high risk for new primary tumors in BRCA carriers and the greater than 90% efficacy for risk reduction procedures underscore the dramatic potential to directly reduce breast cancer incidence, mortality, and disparity in high-risk, underserved Latinas.
Laparoscopic removal of the tubes and ovaries after completion of childbearing is a relatively economical one-time intervention with substantial benefits, such as near elimination of ovarian cancer risk and 50% reduction of breast cancer risk.
Increasing the rate of participation in risk- and age-appropriate screening and risk reduction procedures among women in families with increased risk will result in reduced incidence of breast cancer, late stage disease, and breast cancer-specific mortality in the near term. We can likely have a significant impact on facilitating diagnosis of smaller, limited-stage cancers by prompting even simple, relatively economic actions, such as:
- Performing breast self-exams – Most underserved women only seek physician evaluation after self-detection of a breast mass. Enhanced breast self-exam skills and regular performance increases self-awareness and may provide particular advantage for young high risk Latinas.
- Obtaining clinical breast exams – The limit of detection by palpation is about 1 cm., and breast exams by a clinician every 6 months for high risk Latinas enhances the likelihood of earlier stage diagnosis and promotes adherence to imaging recommendations.
- Taking advantage of available sponsored mammographic screening programs – While breast MRI is the standard of care for women with a BRCA mutation, access to this expensive technology is limited in underserved U.S. settings and virtually absent in low and middle income countries. Mammography is less sensitive in young women, but generally widely available.