Exploring attitudes, beliefs, and communication preferences of Latino community members regarding BRCA1/2 mutation testing and preventive strategies

Genetics in Medicine

Volumn 12, Issue 2, 2010, Pages 105-115

  Kinney, Anita Yeomans ^a,b,c   Gammon, Amanda ^a   Coxworth, James ^a,b   Simonsen, Sara E ^a,c   Arce Laretta, Maritza ^d  

^a UNIVERSITY OF UTAH   (United States)

^b UNIVERSITY OF UTAH   (United States)

^c UNIVERSITY OF UTAH SCHOOL OF MEDICINE   (United States)

^d UTAH DEPARTMENT OF HEALTH   (United States)

Author keywords

Communication; Focus groups; Genetic testing; Hereditary breast and ovarian cancer; Latino perspectives

Indexed keywords

BRCA1 PROTEIN; BRCA2 PROTEIN;

ADULT; AGED; ARTICLE; BREAST CANCER; CANCER PREVENTION; CANCER RISK; CLINICAL GENETICS; FAMILIAL CANCER; FEMALE; GENE MUTATION; GENETIC ANALYSIS; GENETIC COUNSELING; GENETIC RISK; GENETIC SERVICE; HEALTH CARE ACCESS; HISPANIC; HUMAN; MAJOR CLINICAL STUDY; MALE; OVARY CANCER; PREVENTIVE HEALTH SERVICE; RISK ASSESSMENT;

ADULT; AGED; BREAST NEOPLASMS; COMMUNICATION BARRIERS; CULTURE; FEMALE; GENES, BRCA1; GENETIC COUNSELING; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HISPANIC AMERICANS; HUMANS; MALE; MIDDLE AGED; MUTATION; OVARIAN NEOPLASMS; RESIDENCE CHARACTERISTICS; YOUNG ADULT;

EID: 77149165429     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/GIM.0b013e3181c9af2d     Document Type: Article

References (72)

1. Frank TS, Deffenbaugh AM, Reid JE, et al. Clinical characteristics of individuals with germline mutations in BRCA1 and BRCA2: analysis of 10,000 individuals. J Clin Oncol 2002;20:1480-1490.
2. Pal T, Permuth-Wey J, Betts JA, et al. BRCA1 and BRCA2 mutations account for a large proportion of ovarian carcinoma cases. Cancer 2005; 104:2807-2816.
3. Evans DG, Shenton A, Woodward E, Lalloo F, Howell A, Maher ER. Pen-etrance estimates for BRCA1 and BRCA2 based on genetic testing in a Clinical Cancer Genetics service setting: risks of breast/ovarian cancer quoted should reflect the cancer burden in the family. BMC Cancer 2008;8:155.
4. Chen S, Parmigiani G. Meta-analysis of BRCA1 and BRCA2 penetrance. J Clin Oncol 2007;25:1329-1333.
5. Schwartz GF, Hughes KS, Lynch HT, et al. Consensus Conference Committee. The International Consensus Conference Committee. Proceedings of the International Consensus Conference on breast cancer risk, genetics, & risk management. Cancer 2008;113:2627-2637.
6. Gronwald J, Tung N, Foulkes WD, et al. Tamoxifen and contralateral breast cancer in BRCA1 and BRCA2 carriers: an update. Int J Cancer 2006;118:2281-2284.
7. United States Preventive Services Task Force. Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: recommendation statement. Ann Intern Med 2005;143:355-361.
8. National Comprehensive Cancer Network. Genetic familial hereditary risk assessment: breast and ovarian cancer V.I. Fort Washington, PA: National Comprehensive Cancer Network, 2008.
9. Halbert CH. Genetic counseling and testing for breast cancer risk in African Americans. LDI Issue Brief 2006;12:1-4.
10. Wideroff L, Vadaparampil ST, Breen N, Croyle RT, Freedman AN. Awareness of genetic testing for increased cancer risk in the year 2000 National Health Interview Survey. Community Genet 2003;6:147-156.
11. Schwartz MD, Peshkin BN, Tercyak KP, Taylor KL, Valdimarsdottir H. Decision making and decision support for hereditary breast-ovarian cancer susceptibility. Health Psychol 2005;24:S78-S84.
12. Meischke H, Bowen D, Kuniyuki A. Awareness of genetic testing for breast cancer risk among women with a family history of breast cancer: effect of women's information sources on their awareness. Cancer Detect Prev 2001; 25:319-327.
13. Benjamin-Garner R, Oakes JM, Meischke H, et al. Sociodemographic differences in exposure to health information. Ethn Dis 2002;12:124-134.
14. Vadaparampil ST, Wideroff L, Breen N, Trapido E. The impact of acculturation on awareness of genetic testing for increased cancer risk among Hispanics in the year 2000 National Health Interview Survey. Cancer Epidemiol Biomarkers Prev 2006;15:618-623.
15. Kinney AY, Simonsen SE, Baty BJ, et al. Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred. Am J Med Genet A 2006;140:813-826.
16. Bottorff JL, Ratner PA, Balneaves LG, et al. Women's interest in genetic testing for breast cancer risk: the influence of sociodemographics and knowledge. Cancer Epidemiol Biomarkers Prev 2002;11:89-95.
17. Ropka ME, Wenzel J, Phillips EK, Siadaty M, Philbrick JT. Uptake rates for breast cancer genetic testing: a systematic review. Cancer Epidemiol Bio-markers Prev 2006;15:840-855.
18. U.S. Census Bureau. Resident population estimates of the United States by sex, race and Hispanic origin [serial online]. 2001. Available at: http://www census gov/population/estimates/nation/infile3-1 txt. Accessed July 1, 2009.
19. Howe HL, Wu X, Ries LA, et al. Annual report to the nation on the status of cancer, 1975-2003, featuring cancer among U.S. Hispanic/Latino populations. Cancer 2006;107:1711-1742.
20. Smedley BD, Stith AY, Nelson AR, editors. Unequal treatment: confronting racial and ethnic disparities in health care. Washington, DC: National Academic Press, 2002.
21. U.S. Census Bureau. Health insurance coverage: 2001. Washington, DC: US Census Bureau, 2004 [serial online].
22. Weitzel JN, Lagos V, Blazer KR, et al. Prevalence of BRCA mutations and founder effect in high-risk Hispanic families. Cancer Epidemiol Biomarkers Prev 2005;14:1666-1671.
23. Olopade OI, Fackenthal JD, Dunston G, Tainsky MA, Collins F, Whitfield-Broome C. Breast cancer genetics in African Americans. Cancer 2003;97: 236-245.
24. Hall MJ, Reid JE, Burbidge LA, et al. BRCA1 and BRCA2 mutations in women of different ethnicities undergoing testing for hereditary breast-ovarian cancer. Cancer 2009;115:2222-2233.
25. Ricker C, Lagos V, Feldman N, et al. If we build it. Will they come?-establishing a cancer genetics services clinic for an underserved predominantly Latina cohort. J Genet Couns 2006;15:505-514.
26. Penchaszadeh VB. Genetic counseling issues in Latinos. Genet Test 2001; 5:193-200.
27. Elder JP, Ayala GX, Parra-Medina D, Talavera GA. Health communication in the Latino community: issues and approaches. Annu Rev Public Health 2009;30:227-251.
28. Morgan DL, Krueger RA. The focus group kit. Thousand Oaks, CA: SAGE Publications, 1998.
29. Patton MQ. Qualitative research and evaluation methods, 3 ed. Thousand Oaks, CA: Sage Publications, 2002.
30. Billison JM. The Power of Focus Groups: focus on international development, Barrington, Rhode Island. Barrington, RI: Skywood Press, 2004.
31. Trochim WMK. The research methods knowledge base, 2nd ed. Cincinnati, OH: Atomic Dog, 2001.
32. Baty BJ, Kinney AY, Ellis SM. Developing culturally sensitive cancer genetics communication aids for African Americans. Am J Med Genet A 2003;118:146-155.
33. Singer E, Antonucci T, Van HJ. Racial and ethnic variations in knowledge and attitudes about genetic testing. Genet Test 2004;8:31-43.
34. Halbert CH, Kessler LJ, Mitchell E. Genetic testing for inherited breast cancer risk in African Americans. Cancer Invest 2005;23:285-295.
35. MacDonald DJ, Sarna L, Giger JN, Van SG, Bastani R, Weitzel JN. Comparison of Latina and non-Latina white women's beliefs about communicating genetic cancer risk to relatives. J Health Commun 2008;13:465-479.
36. Kendall J, Kendall C, Catts ZA, Radford C, Dasch K. Using adult learning theory concepts to address barriers to cancer genetic risk assessment in the African American community. J Genet Couns 2007;16:279-288.
37. Health literacy: a prescription to end confusion. Washington, DC: The National Academics Press, 2004.
38. Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM. Measuring numeracy without a math test: development of the Subjective Numeracy Scale. Med Decis Making 2007;27:672-680.
39. Eichmeyer JN, Northrup H, Assel MA, Goka TJ, Johnston DA, Williams AT. An assessment of risk understanding in Hispanic genetic counseling patients. J Genet Couns 2005;14:319-328.
40. Schapira MM, Nattinger AB, McHorney CA. Frequency or probability? A qualitative study of risk communication formats used in health care. Med Decis Making 2001;21:459-467.
41. Julian-Reynier C, Welkenhuysen M, Hagoel L, Decruyenaere M, Hopwood P. Risk communication strategies: state of the art and effectiveness in the context of cancer genetic services. Eur J Hum Genet 2003;11:725-736.
42. Thompson HS, Wahl E, Fatone A, Brown K, Kwate NO, Valdimarsdottir H. Enhancing the readability of materials describing genetic risk for breast cancer. Cancer Control 2004;11:245-253.
43. Kreuter MW, Green MC, Cappella JN, et al. Narrative communication in cancer prevention and control: a framework to guide research and application. Ann Behav Med 2007;33:221-235.
44. Wilkin HA, Valente TW, Murphy S, Cody MJ, Huang G, Beck V. Does entertainment-education work with Latinos in the United States? Identification and the effects of a telenovela breast cancer storyline. J Health Commun 2007;12:455-469.
45. Wasserman M, Bender D, Lee SY. Use of preventive maternal and child health services by Latina women: a review of published intervention studies. Med Care Res Rev 2007;64:4-45.
46. Austin LT, Ahmad F, McNally MJ, Stewart DE. Breast and cervical cancer screening in Hispanic women: a literature review using the health belief model. Womens Health Issues 2002;12:122-128.
47. Hether HJ, Huang GC, Beck V, Murphy ST, Valente TW. Entertainment- education in a media-saturated environment: examining the impact of single and multiple exposures to breast cancer storylines on two popular medical dramas. J Health Commun 2008;13:808-823.
48. Aitaoto N, Braun KL, Dang KL, So'a T. Cultural considerations in developing church-based programs to reduce cancer health disparities among Samoans. Ethn Health 2007;12:381-400.
49. Sauaia A, Min SJ, Lack D, et al. Church-based breast cancer screening education: impact of two approaches on Latinas enrolled in public and private health insurance plans. Prev Chronic Dis 2007;4:A99.
50. Vega WA, Rodriguez MA, Gruskin E. Health disparities in the Latino population. Epidemiol Rev 2009;31:99-112.
51. Quillin JM, Ramakrishnan V, Borzelleca J, Bodurtha J, Bowen D, Baer WD. Paternal relatives and family history of breast cancer. Am J Prev Med 2006;31:265-268.
52. Kupfer SS, McCaffrey S, Kim KE. Racial and gender disparities in hereditary colorectal cancer risk assessment: the role of family history. J Cancer Educ 2006;21:S32-S36.
53. Ziogas A, Anton-Culver H. Validation of family history data in cancer family registries. Am J Prev Med 2003;24:190-198.
54. United States Department of Health and Human Services. U.S. Surgeon General's Family Health History Initiative. Available at: http://www.hhs. gov/familyhistory/. Accessed November 27, 2009.
55. Cohn WF, Jones SM, Miesfeldt S. "Are you at risk for hereditary breast cancer?": development of a personal risk assessment tool for hereditary breast and ovarian cancer. J Genet Couns 2008;17:64-78.
56. Ersig AL, Williams JK, Hadley DW, Koehly LM. Communication, encouragement, and cancer screening in families with and without mutations for hereditary nonpolyposis colorectal cancer: a pilot study. Genet Med 2009; 11:728-734.
57. Mellon S, Janisse J, Gold R, et al. Predictors of decision making in families at risk for inherited breast/ovarian cancer. Health Psychol 2009;28:38-47.
58. Kieran S, Loescher LJ, Lim KH. The role of financial factors in acceptance of clinical BRCA genetic testing. Genet Test 2007;11:101-110.
59. Wells KJ, Roetzheim RG. Health disparities in receipt of screening mam-mography in Latinas: a critical review of recent literature. Cancer Control 2007;14:369-379.
60. Mereopol NJ, Schraq D, Smith TJ. American Society of Clinical Oncology Guidance Statement: the cost of cancer care. J Clin Oncol 2009;27:3868-3874.
61. Gorin SS, Heck JE. Cancer screening among Latino subgroups in the United States. Prev Med 2005;40:515-526.
62. Dohan D, Schrag D. Using navigators to improve care of underserved patients. Cancer 2005;104:848-855.
63. Fernandez ME, Gonzales A, Tortolero-Luna G, et al. Effectiveness of Cultivando la Salud: a breast and cervical cancer screening promotion program for low-income Hispanic women. Am J Public Health 2009;99: 936-943.
64. Wainberg S, Husted J. Utilization of screening and preventive surgery among unaffected carriers of a BRCA1 or BRCA2 gene mutation. Cancer Epidemiol Biomarkers Prev 2004;13:1989-1995.
65. Botkin JR, Smith KR, Croyle RT, et al. Genetic testing for a BRCA1 mutation: prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet A 2003;118:201-209.
66. Miller SM, Roussi P, Daly MB, et al. Enhanced counseling for women undergoing BRCA1/2 testing: impact on subsequent decision making about risk reduction behaviors. Health Educ Behav 2005;32:654-667.
67. Hughes C, Fasaye GA, LaSalle VH, Finch C. Sociocultural influences on participation in genetic risk assessment and testing among African American women. Patient Educ Couns 2003;51:107-114.
68. Tejeda S, Thompson B, Coronado GD, Martin DP. Barriers and facilitators related to mammography use among lower educated Mexican women in the USA. Soc Sci Med 2009;68:832-839.
69. Kreuter MW, Lukwago SN, Bucholtz RD, Clark EM, Sanders-Thompson V. Achieving cultural appropriateness in health promotion programs: targeted and tailored approaches. Health Educ Behav 2003;30:133-146.
70. Weiler DM, Crist JD. Diabetes self-management in a Latino social environment. Diabetes Educ 2009;35:285-292.
71. Black DR, Blue CL, Coster DC. Using social marketing to develop and test tailored health messages. Am J Health Behav 2001;25:260-271.
72. Zavertnik JJ. Strategies for reaching poor Blacks and Hispanics in Dade County, Florida. Cancer 1993;72(3 suppl):1088-1092.