Cancer Studies and Molecular Medicine · Vol. 5, No. 1 · 2019 · pp. e1–e3 · e-ISSN 2377-1518

Engaging African Americans in Breast Cancer Prevention Strategies: A Partnership Between a Community Cancer Center and the African American Community in Delaware

Jennifer Sims-Mourtada, Zohra Ali-Khan Catts, Patricia Swanson, Nora Katurakes

Center for Translational Cancer Research, Helen F Graham Cancer Center and Research Institute, Christiana Care Health Services, Inc, Newark, DE 19713, USAUnited States
Cancer Genetic Counseling, Helen F Graham Cancer Center and Research Institute, Christiana Care Health Services, Inc, Newark, DE 19713, USAUnited States
Cancer Outreach, Helen F Graham Cancer Center and Research Institute, Christiana Care Health Services, Inc, Newark, DE 19713, USAUnited States

DOI: https://doi.org/10.17140/csmmoj-5-e007 · Published 2019-04-09 · Licence: https://creativecommons.org/licenses/by/4.0 · © 2019 The Author(s)

Abstract

Although breast cancer incidence has been stable for non-hispanic whites since the early 2000s, incidence rates of invasive breast cancers in African Americans (AA) are rising (0.9%/ year 2005-2014).1 This is especially true for younger black women. Breast cancer incidence in black women under 45 years has recently surpassed that of their white counterparts.2 This is concerning as breast cancer specific mortality is higher in African Americans than all other races. Although many breast cancer risk factors have been identified, there is a need to develop breast prevention strategies specifically targeting the AA community.

OpenJournal PUBLISHERS Editorial Engaging African Americans in Breast Cancer Prevention Strategies: A Partnership Between a Community Cancer Center and the African American Community in Delaware 1* 2 1 3 Jennifer Sims-Mourtada, PhD ; Zohra Ali-Khan Catts, MS, LCGC ; Patricia Swanson, BSN, RN ; Nora Katurakes, MSN, RN 1Center for Translational Cancer Research, Helen F Graham Cancer Center and Research Institute, Christiana Care Health Services, Inc, Newark, DE 19713, USA 2Cancer Genetic Counseling, Helen F Graham Cancer Center and Research Institute, Christiana Care Health Services, Inc, Newark, DE 19713, USA 3Cancer Outreach, Helen F Graham Cancer Center and Research Institute, Christiana Care Health Services, Inc, Newark, DE 19713, USA * *Corresponding author Jennifer Sims-Mourtada, PhD Director,Translational Breast Cancer Research, Center for Translational Cancer Research, Helen F Graham Cancer Center and Research Institute, Christiana Care Health Services, Inc, Newark, DE 19713, USA;Tel. 302-623-4648; E-mail: jsimsmourtada@christianacare.org Article information st nd th Received: April 1 , 2019; Accepted: April 2 , 2019; Published: April 9 , 2019 Cite this article Sims-Mourtada J, Catts ZAK, Swanson P, Katurakes N. Engaging African Americans in breast cancer prevention strategies:A partnership between a community cancer center and the African American community in Delaware. Cancer Stud Mol Med Open J. 2019; 5(1): e1-e3. doi: 10.17140/CSMMOJ-5-e007 lthough breast cancer incidence has been stable for non-his- increased risk of breast cancer (HR: 1.38, 95% CI: 1.25-1.52).4 panic whites since the early 2000s, incidence rates of inva- A sive breast cancers in African Americans (AA) are rising (0.9%/ In addition to decreasing breast cancer risk through year 2005-2014).1 This is especially true for younger black women. modifiable lifestyle factors, genetic counseling and testing can Breast cancer incidence in black women under 45 years has recent- substantially lower breast cancer risk by identifying women who 2 5 ly surpassed that of their white counterparts.2 This is concerning carry hereditary mutations.5 Testing results can be used to recom- as breast cancer specific mortality is higher in African Americans mend preventative interventions and enhanced screening options than all other races. Although many breast cancer risk factors have for these patients, and can also enable risk assessment among been identified, there is a need to develop breast prevention strate- relatives who may also benefit. Furthermore, participation in gies specifically targeting the AA community.

genetic counseling has been shown to increase the accuracy of risk perception, reducing cancer related anxiety and depression.5 A potential factor contributing to increased breast can- Although AA have the same risk for hereditary breast cancer as cer incidence in African Americans is an increasing obesity rate Caucasians, their participation in genetic counseling and testing is among this population. A recent study using ecological analysis to substantially lower.6 A recent meta-analysis of studies investigat- quantify the long-term effect of breast cancer risk factors found ing access, perceptions, knowledge and attitudes about genetic that black women younger than 40 years experienced the larg- counseling reported low awareness and knowledge of genetic est increase in mean body mass index (BMI)compared to white counseling/testing by minority groups including African Ameri- women over the same period. Likewise, African Americans have cans. The authors recommended “to increase awareness and knowledge higher BMI at breast cancer diagnosis and this may be related of genetic testing for cancer risk and to reduce the perceived stigma and taboo 3 7 to presentation with later stage disease.3 Guidelines developed surrounding the topic of cancer in ethnic minority groups”.7 by the American Cancer Society (ACS) and World Cancer Re- search Fund/American Institute for Cancer Research (WCRF/ As one of the first community cancer centers in the AICR) to aid in cancer prevention efforts include maintaining a country to have a genetic counseling program integrated with- healthy body weight, increasing physical activity, eating a nutri- in our multidisciplinary centers and clinical care, the Helen F tious diet, avoiding smoking and reducing alcohol consumption Graham Cancer Center and Research Institute (HFGCCRI) has may be helpful to mitigate increasing breast cancer incidence in proven success with identification and referral of early onset and African Americans. However, a recent study in a prospective co- triple negative breast cancer cases. However, analyses of Afri- hort of 566,398 adults showed that adherence to these guidelines can American breast cancer patients undergoing genetic coun- is lowest among the African American population. In this study, seling at our institution parallel the national trends. Data from adherence to one or less of the risk factor guidelines had a 38% the HFGCCRI cancer registry indicates that although African cc Copyright 2019 by Sims-Mourtada J. This is an open-access article distributed under Creative Commons Attribution 4.0 International License (CC BY 4.0), which allows to copy, redistribute, remix, transform, and reproduce in any medium or format, even commercially, provided the original work is properly cited. Cancer Stud Mol Med Open J. 2019; 5(1): e1-e3. doi: 10.17140/CSMMOJ-5-e007 TM Americans make up 21% of patients diagnosed with early-onset tion be in a story telling format. “The Story of BRENDATM” breast cancer, only 15% of eligible African American patients had is presented from the viewpoint of a young AA woman who undergone genetic counseling. This disparity is further increased has recently been diagnosed with triple negative breast cancer.9 for African American women with triple negative breast cancer, Throughout the presentation, BRENDA leads the audience which is more prevalent in the African American population. through a series of her questions related to triple negative breast All women who are diagnosed with triple-negative breast cancer cancer, genetic testing, participation in research and breast cancer (TNBC) at age≤60-years-old are automatically eligible for genetic prevention. The trained community moderator then provides the counseling, regardless of family history. Although African Ameri- information to answer each of these questions utilizing a script can women represent 41% of this population, their participation written by members of the board as talking points. At the end in genetic counseling remains around 15%. This is particularly of the presentation, the audience is asked to remember the name concerning as the state of Delaware ranks among the highest in BRENDA which is an acronym for the WCRF/AICR guidelines incidence of triple negative breast cancer. Likewise, consistent for breast cancer prevention: Breastfeed, Reduce consumption with national numbers, breast cancer incidence is rising among of alcoholic and sugary beverages, Exercise, Nutritious foods, African Americans in Delaware.8 Do not smoke and Achieve a healthy body weight. Attendees are also provided with a tool-kit containing more information about To address these breast cancer disparities, the Breast breast cancer and resources to determine if genetic counseling Cancer Research Program at the HFGCCRI formed a Commu- may be appropriate. Contact information to a genetics counselor nity Research Advisory Board (CRAB) composed of stakeholders and/or navigator for mammography is also distributed. The num- in the Delaware breast cancer community including members of ber of referrals for genetic counseling and navigation resulting local African American sororities. Membership in the CRAB re- from this education are tracked and used as an outcome measure. quired the commitment of each member to: (1) contribute to HF- To allow for monitoring of the programs outcomes, as well as GCCRI community based participatory research (CBPR) projects collection of data about community attitudes and beliefs about related to breast cancer (2) promote dialog between community breast cancer, participants are given a short survey directly follow- members, breast cancer clinicians and researchers (3) serve as li- ing the program.

aisons to establish trust and understanding of research activities in the community. (4) provide and promote education and dis- As we have just completed the pilot phase of this pro- semination of health, prevention and research information to the gram, it is too early to determine its success in creating a sustain- community.

able community education platform for the AA community and what impact it will have on breast cancer disparities within the Although much research has been done into causes of state long-term. To increase sustainability, the program has been health disparities in breast cancer, dissemination of findings and integrated into the cancer center’s outreach department, which implementation of strategies to overcome these disparities has conducts the educator training, coordinates event scheduling for been slow. In conversations with our CRAB, several critical points community members sponsoring the presentation and serves as a regarding the AA community were brought to our attention: (1) liaison for program participants who seek genetic and/or naviga- There is a lack of understanding in the AA community about tion services at the cancer center. Although still in its early stages, TM different types of breast cancer and how treatments and out- the Story of BRENDATM has been well received by the communi- comes may be different depending on the breast cancer subtype. ty and several participants have sought genetic counseling. As we (2) There is lack of knowledge about genetic counseling and the move to the next phase of the project, we hope to strengthen our benefits of genetic testing for breast cancer prevention (3) There partnership with the AA community and as we build on this pro- is lack of knowledge of general breast cancer prevention strate- gram to reduce breast cancer incidence and improve outcomes gies. For example, members of the community were not aware for all women with breast cancer in the state.

of the linkage between obesity and breast cancer risks or the fact that breastfeeding can reduce risk of breast cancer and (4) Al- CONFLICT OF INTEREST though trust issues remain one of the driving factors for lack of participation by African Americans in research, members also felt The authors declare that they have no conflicts of interest that there is a lack of appreciation of the benefits participation in clinical trials and genetic research by African Americans. Given

References

  1. SocietyAC. Cancer Facts & Figures 2019. 2019. Web site. first project would be a community educational program to adhttps://www.cancer.org/content/dam/cancer-org/research/ dress these specific gaps in knowledge. cancer-facts-and-statistics/annual-cancer-facts-and-figures/2019/cancer-facts-and-figures-2019.pdf. Accessed March Using a community-based participatory research (CBPR) 30, 2019. model, the CRAB choose a peer education platform (Train the Trainer) for delivery of the educational program. In contrast to a
  2. DeSantis CE, Miller KD, Goding Sauer A, Jemal A, Siegel RL. traditional medical format for breast cancer education, the com-Cancer statistics for African Americans, 2019. CA Cancer J Clin. munity members of our board recommended that the presenta- 2019; doi: 10.3322/caac.21555 Cancer Stud Mol Med Open J. 2019; 5(1): e1-e3. doi: 10.17140/CSMMOJ-5-e007 https://doi.org/10.3322/caac.21555
  3. CuiYWhitemanMKLangenbergP. Can obesity explain to breast cancer among African American women. Breast Cancer the racial difference in stage of breast cancer at diagnosis between Res Treat. 2015; 149(1): 31-39. doi: 10.1007/s10549-014-3195-0 black and white women? J Womens Health Gend Based Med. 2002; 11(6): 527-536. doi: 10.1089/152460902760277886 7. Hann KEJ, Freeman M, Fraser L, et al. Awareness, knowledge, perceptions, and attitudes towards genetic testing for cancer risk10.1007/s10549-014-3195-0 https://doi.org/10.1007/s10549-014-3195-0
  4. AkinyemijuTWienerHPisuM. Cancer-related risk factors among ethnic minority groups: A systematic review. BMC Public and incidence of major cancers by race, gender and region; analy-Health. 2017; 17(1): 503. doi: 10.1186/s12889-017-4375-8 sis of the NIH-AARP diet and health study. BMC Cancer. 2017; 17: 597. doi: 10.1186/s12885-017-3557-1 8. Delaware Health and Social Services. Division of Public Health. Cancer incidence and mortality in delware, 2009-201310.1186/s12889-017-4375-8 https://doi.org/10.1186/s12889-017-4375-8
  5. Nelson HD, Pappas M, Zakher B, Mitchell JP, Okinaka-Hu L, 2017. Web site. https://www.dhss.delaware.gov/dhss/dph/dpc/ Fu R. Risk assessment, genetic counseling, and genetic testing for files/2ndaryanalysis_09-13.pdf. Accessed March 30, 2019. BRCA-related cancer in women: a systematic review to update the U.S. Preventive Services Task Force recommendation. Ann Intern 9. Helen F Graham Cancer Center and Research Institute. Web Med. 2014; 160(4): 255-266. doi: 10.7326/M13-1684 site. https://christianacare.org/documents/cancer/BRENDA. pdf. Accessed March 30, 2019 https://doi.org/10.7326/m13-1684
  6. ChurpekJEWalshTZhengY. Inherited predisposition