African American women's limited knowledge and experiences with genetic counseling for hereditary breast cancer

Journal of Genetic Counseling

Volumn 23, Issue 3, 2014, Pages 311-322

  Sheppard, Vanessa B ^a   Graves, Kristi D ^a   Christopher, Juleen ^b   Hurtado De Mendoza, Alejandra ^a   Talley, Costellia ^c   Williams, Karen Patricia ^d  

^a GEORGETOWN UNIVERSITY   (United States)

^b VA MEDICAL CENTER   (United States)

^c MICHIGAN STATE UNIVERSITY   (United States)

^d MICHIGAN STATE UNIVERSITY   (United States)

Author keywords

African American women; Genetic counseling and testing; Hereditary breast cancer; Minority; Provider

Indexed keywords

ADULT; AGED; BLACK PERSON; BREAST TUMOR; FEMALE; GENETIC COUNSELING; GENETICS; HUMAN; MIDDLE AGED; PSYCHOLOGY; YOUNG ADULT;

ADULT; AFRICAN CONTINENTAL ANCESTRY GROUP; AGED; BREAST NEOPLASMS; FEMALE; GENETIC COUNSELING; HUMANS; MIDDLE AGED; YOUNG ADULT;

EID: 84901919335     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-013-9663-6     Document Type: Article

References (73)

1. American Cancer Society (2009). Cancer facts and figures for African Americans 2009-2010. American Cancer Society. http://www.cancer.org/research/ cancerfactsfigures/cancerfactsfiguresforafricanamericans/cancer-facts-figures- for-african-americans-2009-2010
2. American Cancer Society. (2011). Cancer Facts and Figures for African Americans 2011-2012. http://www.cancer.org/acs/groups/content/ @epidemiologysurveilance/documents/document/acspc-027765.pdf.
3. Antoniou, A.; Pharoah, P. D.; Narod, S.; Risch, H. A.; Eyfjord, J. E.; Hopper, J. L.; et al. (2003). Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case Series unselected for family history: a combined analysis of 22 studies. American Journal of Human Genetics, 72, 1117-1130. (Pubitemid 36530000)
4. Armstrong, K.; Micco, E.; Carney, A.; Stopfer, J.; & Putt, M. (2005). Racial differences in the use of BRCA1/2 testing among women with family history of breast or ovarian cancer. JAMA, 293, 1729-1736.
5. Armstrong, K.; Weber, B.; Ubel, P. A.; Guerra, C.; & Schwartz, J. S. (2002). Interest in BRCA1/2 testing in a primary care population. Preventive Medicine, 34, 590-595. (Pubitemid 34971660)
6. Banks-Wallace, J.; & Parks, L. (2004). It's all sacred: African American women's perspectives on spirituality. Issues in Mental Health Nursing, 25, 25-45. (Pubitemid 38167910)
7. Baty, B. J.; Kinney, A. Y.; & Ellis, S. M. (2003). Developing culturally sensitive cancer genetics communication aids for African Americans. American Journal of Medical Genetics, 118A, 146-155. (Pubitemid 37063951)
8. Bourjolly, J. N. (1998). Differences in religiousness among black and white women with breast cancer. Social Work in Health Care, 28, 21-39. (Pubitemid 28376099)
9. Chen, W. Y.; Garber, J. E.; Higham, S.; Schneider, K. A.; Davis, K. B.; Deffenbaugh, A. M.; et al. (2002). BRCA1/2 genetic testing in the community setting. Journal of Clinical Oncology, 20, 4485-4492. (Pubitemid 35334761)
10. Donovan, K. A.; & Tucker, D. C. (2000). Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a sociodemographically diverse sample. Journal of Behavioral Medicine, 23, 15-36. (Pubitemid 30164133)
11. Durfy, S. J.; Bowen, D. J.; McTiernan, A.; Sporleder, J.; & Burke, W. (1999). Attitudes and interest in genetic testing for breast and ovarian cancer susceptibility in diverse groups of women in western Washington. Cancer Epidemiology, Biomarkers and Prevention, 8, 369-375. (Pubitemid 29193892)
12. Eijzenga, W.; Hahn, D. E.; Aaronson, N. K.; Kluijt, I.; & Bleiker, E. M. (2013). Specific psychosocial issues of individuals undergoing genetic counseling for cancer-A literature review. Journal of Genetic Counseling, 1-14.
13. Fong, P. C.; Boss, D. S.; Yap, T. A.; Tutt, A.; Wu, P.; Mergui-Roelvink, M.; et al. (2009). Inhibition of poly(ADP-ribose) polymerase in tumors from BRCA mutation carriers. The New England Journal of Medicine, 361, 123-134.
14. Ford, M. E.; Alford, S. H.; Britton, D.; McClary, B.; & Gordon, H. S. (2007). Factors influencing perceptions of breast cancer genetic counseling among women in an urban health care system. Journal of Genetic Counseling, 16, 735-753. (Pubitemid 350077233)
15. Gao, Q.; Tomlinson, G.; Das, S.; Cummings, S.; Sveen, L.; Fackenthal, J.; et al. (2000). Prevalence of BRCA1 and BRCA2 mutations among clinic-based African American families with breast cancer. Human Genetics, 107, 186-191.
16. Glanz, K.; Croyle, R. T.; Chollette, V. Y.; & Pinn, V. W. (2003). Cancer-related health disparities in women. American Journal of Public Health, 93, 292-298. (Pubitemid 36163376)
17. Gonzalez-Angulo, A. M.; Timms, K. M.; Liu, S.; Chen, H.; Litton, J. K.; Potter, J.; et al. (2011). Incidence and outcome of BRCA mutations in unselected patients with triple receptor-negative breast cancer. Clinical Cancer Research, 17, 1082-1089.
18. Grann, V. R.; Jacobson, J. S.; Thomason, D.; Hershman, D.; Heitjan, D. F.; & Neugut, A. I. (2002). Effect of prevention strategies on survival and quality-adjusted survival of women with BRCA1/2 mutations: an updated decision analysis. Journal of Clinical Oncology, 20, 2520-2529. (Pubitemid 34525739)
19. Graves, K. D.; Christopher, J. L.; Harrison, T. M.; Peshkin, B. N.; Isaacs, C.; & Sheppard, V. B. (2011). Providers' perceptions and practices regarding/BRCA1/2/genetic counseling and testing in african american women. Journal of Genetic Counseling, 20, 674-689.
20. Gullatte, M. M.; Brawley, O.; Kinney, A.; Powe, B.; & Mooney, K. (2010). Religiosity, spirituality, and cancer fatalism beliefs on delay in breast cancer diagnosis in African American women. Journal of Religion and Health, 49, 62-72.
21. Haffty, B. G.; Silber, A.; Matloff, E.; Chung, J.; & Lannin, D. (2006). Racial differences in the incidence of BRCA1 and BRCA2 mutations in a cohort of early onset breast cancer patients: African American compared to white women. Journal of Medical Genetics, 43, 133-137. (Pubitemid 43259625)
22. Halbert, C. H.; Kessler, L.; Wileyto, E. P.; Weathers, B.; Stopfer, J.; Domchek, S.; et al. (2006). Breast cancer behaviors among African American women with a strong family history of breast cancer. Preventive Medicine, 43, 385-388. (Pubitemid 44648298)
23. Halbert, C. H.; Kessler, L. J.; & Mitchell, E. (2005). Genetic testing for inherited breast cancer risk in African Americans. Cancer Investigation, 23, 285-295. (Pubitemid 41656967)
24. Halbert, C. H.; Kumanyika, S.; Bowman, M.; Bellamy, S. L.; Briggs, V.; Brown, S.; et al. (2010). Participation rates and representativeness of African American recruited to a health promotion program. Health Education Research, 25, 6-13.
25. Hall, M.; & Olopade, O. I. (2005). Confronting genetic testing disparities: knowledge is power. JAMA, 293, 1783-1785.
26. Henderson, P. D.; Gore, S. V.; Davis, B. L.; & Condon, E. H. (2003). African American women coping with breast cancer: a qualitative analysis. Oncology Nursing Forum, 30, 641-647.
27. Honda, K. (2003). Who gets the information about genetic testing for cancer risk? The role of race/ethnicity, immigration status, and primary care clinicians. Clinical Genetics, 64, 131-136. (Pubitemid 36944105)
28. Hughes, C.; Fasaye, G. A.; LaSalle, V. H.; & Finch, C. (2003). Sociocultural influences on participation in genetic risk assessment and testing among African American women. Patient Education and Counseling, 51, 107-114. (Pubitemid 37311327)
29. Hughes, C.; Gomez-Caminero, A.; Benkendorf, J.; Kerner, J.; Isaacs, C.; Barter, J.; et al. (1997). Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Education and Counseling, 32, 51-62. (Pubitemid 27395979)
30. Ihnen, M.; zu Eulenburg, C.; Kolarova, T.; Qi, J. W.; Manivong, K.; & Chalukya, M. (2013). Therapeutic Potential of the Poly (ADP-ribose) Polymerase Inhibitor Rucaparib for the Treatment of Sporadic Human Ovarian Cancer. Molecular Cancer Therapeutics, 12(6), 1002-1015.
31. John, E. M.; Miron, A.; Gong, G.; Phipps, A. I.; Felberg, A.; Li, F. P.; et al. (2007). Prevalence of pathogenic BRCA1 mutation carriers in 5 US racial/ethnic groups. JAMA, 298, 2869-2876.
32. Kendall, J.; Kendall, C.; Catts, Z.; Radford, C.; & Dasch, K. (2007). Using adult learning theory concepts to address barriers to cancer genetic risk assessment in the african american community. Journal of Genetic Counseling, 16, 279-288. (Pubitemid 46878630)
33. Kessler, L.; Collier, A.; Brewster, K.; Smith, C.; Weathers, B.; Wileyto, E. P.; et al. (2005). Attitudes about genetic testing and genetic testing intentions in African American women at increased risk for hereditary breast cancer. Genetics in Medicine, 7, 230-238. (Pubitemid 40638068)
34. Kinney, A. Y.; Croyle, R. T.; Dudley, W. N.; Bailey, C. A.; Pelias, M. K.; & Neuhausen, S. L. (2001). Knowledge, attitudes, and interest in breast-ovarian cancer gene testing: a survey of a large African-American kindred with a BRCA1 mutation. Preventive Medicine, 33, 543-551. (Pubitemid 34101877)
35. Kinney, A. Y.; Simonsen, S. E.; Baty, B. J.; Mandal, D.; Neuhausen, S. L.; Seggar, K.; et al. (2006). Risk reduction behaviors and provider communication following genetic counseling and BRCA1 mutation testing in an African American kindred. Journal of Genetic Counseling, 15, 293-305. (Pubitemid 44252997)
36. Lee, S.-C.; Bernhardt, B. A.; & Helzlsouer, K. J. (2002). Utilization of BRCA1/2 genetic testing in the clinical setting. Cancer, 94, 1876-1885. (Pubitemid 34241127)
37. Lerman, C.; Hughes, C.; Benkendorf, J. L.; Biesecker, B.; Kerner, J.; Willison, J.; et al. (1999). Racial differences in testing motivation and psychological distress following pretest education for BRCA1 gene testing. Cancer Epidemiology, Biomarkers and Prevention, 8, 361-367. (Pubitemid 29193891)
38. Lipkus, I. M.; Iden, D.; Terrenoire, J.; & Feaganes, J. R. (1999). Relationships among breast cancer concern, risk perceptions, and interest in genetic testing for breast cancer susceptibility among African-American women with and without a family history of breast cancer. Cancer Epidemiology, Biomarkers and Prevention, 8, 533-539. (Pubitemid 29270338)
39. Ma, A. M.; Barone, J.; Wallis, A. E.; Wu, N. J.; Garcia, L. B.; Estabrook, A.; et al. (2008). Noncompliance with adjuvant radiation, chemotherapy, or hormonal therapy in breast cancer patients. American Journal of Surgery, 196, 500-504.
40. MacNew, H. G.; Rudolph, R.; Brower, S. T.; Beck, A. N.; & Meister, E. A. (2010). Assessing the knowledge and attitudes regarding genetic testing for breast cancer risk in our region of southeastern Georgia. The Breast Journal, 16, 189-192.
41. Malone, K. E.; Daling, J. R.; Doody, D. R.; Hsu, L.; Bernstein, L.; Coates, R. J.; et al. (2006). Prevalence and predictors of BRCA1 and BRCA2 mutations in a population-based study of breast cancer in white and black American women ages 35 to 64 years. Cancer Research, 66, 8297-8308. (Pubitemid 44299201)
42. McClain, M. R.; Palomaki, G. E.; Nathanson, K. L.; & Haddow, J. E. (2005). Adjusting the estimated proportion of breast cancer cases associated with BRCA1 and BRCA2 mutations: public health implications. Genetics in Medicine, 7, 28-33. (Pubitemid 40111128)
43. Meiser, B.; Eisenbruch, M.; Barlow-Stewart, K.; Tucker, K.; Steel, Z.; & Goldstein, D. (2001). Cultural aspects of cancer genetics: setting a research agenda. Journal of Medical Genetics, 38, 425-429. (Pubitemid 32661202)
44. Metcalfe, K.; Gershman, S.; Lynch, H. T.; Ghadirian, P.; Tung, N.; Kim-Sing, C.; et al. (2011). Predictors of contralateral breast cancer in BRCA1 and BRCA2 mutation carriers. British Journal of Cancer, 104, 1384-1392.
45. Metcalfe, K.; Lubinski, J.; Lynch, H. T.; Ghadirian, P.; Foulkes, W. D.; Kim-Sing, C.; et al. (2010). Family history of cancer and cancer risks in women with BRCA1 or BRCA2 mutations. Journal of the National Cancer Institute, 102, 1874-1878.
46. Nanda, R.; Schumm, L. P.; Cummings, S.; Fackenthal, J. D.; Sveen, L.; Ademuyiwa, F.; et al. (2005). Genetic testing in an ethnically diverse cohort of high-risk women: a comparative analysis of BRACA1 and BRACA2 mutations in American families of Europen and African Ancestry. JAMA, 294, 1925-1933. (Pubitemid 41464694)
47. Narod, S. A.; & Salmena, L. (2011). BRCA1 and BRCA2 mutations and breast cancer. Discovery Medicine, 12, 445-3.
48. Nathanson, K. L.; & Domchek, S. M. (2011). Therapeutic approaches for women predisposed to breast cancer. Annual Review of Medicine, 62, 295-306.
49. National Cancer Institute (2013). Psychosocial issues in inherited breast cancer syndromes. http://www.cancer.gov/cancertopics/pdq/genetics/breast-and- ovarian/HealthProfessional/page4
50. Newman, L. A.; Griffith, K. A.; Jatoi, I.; Simon, M. S.; Crowe, J. P.; & Colditz, G. A. (2006). Meta-analysis of survival in african american and white american patients with breast cancer: ethnicity compared with socieoeconomic status. Journal of Clinical Oncology, 24, 1342-1349. (Pubitemid 46621996)
51. Pal, T.; Vadaparampil, S.; Betts, J.; Miree, C.; Li, S.; & Narod, S. A. (2008). BRCA1/2 in high-risk African American women with breast cancer: providing genetic testing through various recruitment strategies. Genetic Testing, 12, 401-407.
52. Pope, C.; Ziebland, & Mays, N. (2000). Qualitative research in health care analysing qualitative data. BMJ, 320, 114-116.
53. Rebbeck, T. R.; Friebel, T.; Lynch, H. T.; Neuhausen, S. L.; van't Veer, L.; & Garber, J. E. (2004). Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: the PROSE study group. Journal of Clinical Oncology, 22, 1055-1062. (Pubitemid 41095038)
54. Rebbeck, T. R.; Lynch, H. T.; Neuhausen, S. L.; Narod, S. A.; Van't Veer, L.; Garber, J. E.; et al. (2002). Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. The New England Journal of Medicine, 346, 1616-1622. (Pubitemid 34755669)
55. Ropka, M. E.; Wenzel, J.; Phillips, E. K.; Siadaty, M.; & Philbrick, J. T. (2006). Uptake rates for breast cancer genetic testing: a systematic review. Cancer Epidemiology, Biomarkers and Prevention, 15, 840-855. (Pubitemid 43823507)
56. Sheppard, V. B.; Adams, I. F.; Lamdan, R.; & Taylor, K. L. (2011a). The role of patient-provider communication for black women making decisions about breast cancer treatment. Psychooncology, 20, 1309-1316.
57. Sheppard, V. B.; Davis, K.; Boisvert, M.; Jennings, Y.; & Montalvo, B. (2011b). Do recently diagnosed black breast cancer patients find questions about cancer fatalism acceptable? A preliminary report. Journal of Cancer Education, 26, 5-10.
58. Sheppard, V. B.; Mays, D.; LaVeist, T.; & Tercyak, K. P. (2013). Medical mistrust and self-efficacy influence Black women's level of engagement in BRCA1/2 genetic counseling and testing. Journal of the National Medical Association, 105(1), 17-22.
59. Sherman, K. A.; Miller, S. M.; Shaw, L. K.; Cavanagh, K.; & Gorin, S. S. (2013). Psychosocial approaches to participation in BRCA1/2 genetic risk assessment among African American women: a systematic review. Journal of Community Genetics 1-10
60. Short, P. F.; Vasey, J. J.; & Tunceli, K. (2005). Cancer, 103, 1292-1301. (Pubitemid 40328102)
61. Simon, M. S.; Korczak, J. F.; Yee, C. L.; Malone, K. E.; Ursin, G.; Bernstein, L.; et al. (2006). Breast cancer risk estimates for relatives of white and African American women with breast cancer in the Women's Contraceptive and Reproductive Experiences Study. Journal of Clinical Oncology, 24, 2498-2504. (Pubitemid 46630626)
62. Simon, M. S.; & Petrucelli, N. (2009). Hereditary breast and ovarian cancer syndrome: the impact of race on uptake of genetic counseling and testing. Methods in Molecular Biology, 471, 487-500.
63. Skinner, C. S.; Schildkraut, J. M.; Berry, D.; Calingaert, B.; Marcom, K.; Sugarman, J.; et al. (2002). Pre-counseling education materials for BRCA testing: does tailoring make a difference? Genetic Testing, 6, 93-105.
64. Susswein, L. R.; Skrzynia, C.; Lange, L. A.; Booker, J. K.; Graham, M. L.; & Evans, J. P. (2008). Increased uptake of BRCA1/2 genetic testing among African American women with a recent diagnosis of breast cancer. Journal of Clinical Oncology, 26(1), 32-36.
65. Suther, S.; & Kiros, G. E. (2009). Barriers to the use of genetic testing: a study of racial and ethnic disparities. Genetics in Medicine, 11, 655-662.
66. Thompson, D.; & Easton, D. F. (2002). Cancer Incidence in BRCA1 mutation carriers. Journal of the National Cancer Institute, 94, 1358-1365. (Pubitemid 35154140)
67. Thompson, H. S.; Valdimarsdottir, H. B.; Duteau-Buck, C.; Guevarra, J.; Bovbjerg, D. H.; Richmond-Avellaneda, C.; et al. (2002). Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women. Cancer Epidemiology, Biomarkers and Prevention, 11, 1579-1585. (Pubitemid 36020010)
68. Thompson, H. S.; Valdimarsdottir, H. B.; Jandorf, L.; & Redd, W. (2003). Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina and Caucasian women. Patient Education and Counseling, 51, 217-227. (Pubitemid 37433821)
69. Tutt, A.; Robson, M.; Garber, J. E.; Domchek, S. M.; Audeh, M. W.; Weitzel, J. N.; et al. (2010). Oral poly(ADP-ribose) polymerase inhibitor olaparib in patients with BRCA1 or BRCA2 mutations and advanced breast cancer: a proof-of-concept trial. Lancet, 376, 235-244.
70. U.S. Preventive Services Task Force. (2005). Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: recommendation statement. Annals of Internal Medicine, 143, 355-361.
71. U. S. Census Bureau. (2011). "State and County Quickfacts: Dictrict of Columbia." Retrieved September 20, 2012, from http://quickfacts.census. gov/qfd/states/11000.html.
72. Weathers, B.; Kessler, L.; Collier, A.; Stopfer, J. E.; Domchek, S.; & Halbert, C. H. (2009). Utilization of religious coping strategies among African American women at increased risk for hereditary breast and ovarian cancer. Family & Community Health, 32, 218-227.
73. Williams, K. P.; Mullan, P. B.; & Fletcher, F. (2007). Working with African American women to develop a cancer literacy assessment tool. Journal of Cancer Education, 22, 241-244.