Risk reduction behaviors and provider communication following genetic counseling and BRCA1 mutation testing in an African American kindred

Journal of Genetic Counseling

Volumn 15, Issue 4, 2006, Pages 293-305

  Kinney, Anita Yeomans ^a,b   Simonsen, Sara Ellis ^a   Baty, Bonnie Jeanne ^b   Mandal, Diptasri ^c   Neuhausen, Susan L ^d   Seggar, Kate ^a   Holubkov, Richard ^b   Bloor, Lindsey ^a   Smith, Ken ^a,e  

^a UNIVERSITY OF UTAH   (United States)

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

^c LOUISIANA STATE UNIVERSITY SCHOOL OF MEDICINE   (United States)

^d UNIVERSITY OF CALIFORNIA   (United States)

^e UNIVERSITY OF UTAH   (United States)

Author keywords

African Americans; BRCA1 gene mutation; Breast ovarian cancer screening; Genetic testing

Indexed keywords

ADULT; AFRICAN AMERICAN; ARTICLE; BREAST CANCER; CANCER RISK; CANCER SCREENING; CLINICAL ARTICLE; DOCTOR PATIENT RELATION; ETHNIC GROUP; FEMALE; FOLLOW UP; GENE MUTATION; GENETIC ANALYSIS; GENETIC COUNSELING; HEALTH BEHAVIOR; HUMAN; OBSERVATIONAL STUDY; ONCOGENE; OVARY CANCER; RACE DIFFERENCE; RISK REDUCTION;

ADULT; AFRICAN CONTINENTAL ANCESTRY GROUP; BREAST NEOPLASMS; CHOICE BEHAVIOR; COMMUNICATION; DNA MUTATIONAL ANALYSIS; FEMALE; GENES, BRCA1; GENETIC COUNSELING; GENETIC SCREENING; GENETIC TESTING; HEALTH BEHAVIOR; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HETEROZYGOTE DETECTION; HUMANS; MASS SCREENING; MIDDLE AGED; OBSERVATION; OVARIAN NEOPLASMS; PROSPECTIVE STUDIES; RISK ASSESSMENT; RISK REDUCTION BEHAVIOR;

EID: 33747445937     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-006-9026-7     Document Type: Article

References (48)

1. Ahmed, N. U., Fort, J. G., Elzey, J. D., & Bailey, S. (2004). Empowering factors in repeat mammography: Insights from the stories of underserved women. J Ambul Care Manage, 27, 348-355.
2. Ahmed, N. U., Fort, J. G., Elzey, J. D., & Belay, Y. (2005). Empowering factors for regular mammography screening in under-served populations: Pilot survey results in Tennessee. Ethn Dis, 15, 387-394.
3. American Cancer Society (2004). Cancer facts and figures 2004. Atlanta, GA: American Cancer Society.
4. Antoniou, A., Pharoah, P. D., Narod, S., Risch, H. A., Eyfjord, J. E., Hopper, J. L., Loman, N., Olsson, H., Johannsson, O., Borg, A., Pasini, B., Radice, P., Manoukian, S., Eccles, D. M., Tang, N., Olah, E., Anton-Culver, H., Warner, E., Lubinski, J., Gronwald, J., Gorski, B., Tulinius, H., Thorlacius, S., Eerola, H., Nevanlinna, H., Syrjakoski, K., Kallioniemi, O. P., Thompson, D., Evans, C., Peto, J., Lalloo, F., Evans, D. G., & Easton, D. F. (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. Am J Hum Genet, 72, 1117-1130.
5. Baty, B. J., Kinney, A. Y., & Ellis, S. M. (2003). Developing culturally sensitive cancer genetics communication aids for African Americans. Am J Med Genet, 118A, 146-155.
6. Botkin, J. R., Smith, K. R., Croyle, R. T., Baty, B. J., Wylie, J. E., Dutson, D., Chan, A., Hamann, H. A., Lerman, C., McDonald, J., Venne, V., Ward, J. H., & Lyon, E. (2003). Genetic testing for a BRCA1 mutation: Prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet, 118A, 201-209.
7. Burke, W., Daly, M., Garber, J., Botkin, J., Kahn, M. J., Lynch, P., McTiernan, A., Offit, K., Perlman, J., Petersen, G., Thompson, E., & Varricchio, C. (1997). Recommendations for follow-up care of individuals with an inherited predisposition to breast cancer. II. BRCA1 and BRCA2. Cancer Genetics Studies Consortium. JAMA, 277, 997-1003.
8. Caplan, L. S., McQueen, D. V., Qualters, J. R., Leff, M., Garrett, C., & Calonge, N. (2003). Validity of women's self-reports of cancer screening test utilization in a managed care population. Cancer Epidemiol Biomark Prev, 12, 1182-1187.
9. Centers for Disease Control, N. C. F. H. S. (2002). Use of mammography for women 40 years of age and older, according to selected characteristics: Selected years, 1987-2000. internet [On-line]. Available at http://seer.cancer. gov/csr/1972_1999/breast.pdf.
10. Champion, V. L., Menon, U., McQuillen, D. H., & Scott, C. (1998). Validity of self-reported mammography in low-income African-American women 13. Am J Prev Med, 14, 111-117.
11. Corbie-Smith, G., Frank, E., & Nickens, H. (2000). The intersection of race, gender, and primary care: Results from the Women Physicians' Health Study. J Natl Med Assoc, 92, 472-480.
12. Davis, C., Emerson, J. S., & Husaini, B. A. (2005). Breast cancer screening among African American women: Adherence to current recommendations. J Health Care Poor Underserved, 16, 308-314.
13. Domchek, S. M., Eisen, A., Calzone, K., Stopfer, J., Blackwood, A., & Weber, B. L. (2003). Application of breast cancer risk prediction models in clinical practice. J Clin Oncol, 21, 593-601.
14. Dormon, J. H. (1992). Louisiana's 'Creoles of color': Ethnicity, marginality, and identity. Soc Sci Q, 73, 615-627.
15. Dubois, S., & Melancon, M. (2000). Creole is, Creole ain't: Diachronic and synchronic attitudes toward Creole identity in southern Louisiana. Language in Society, 29, 237-258.
16. Eisen, A., & Weber, B. L. (2001). Prophylactic mastectomy for women with BRCA1 and BRCA2 mutations - Facts and controversy. N Engl J Med, 345, 207-208.
17. Ford, D., Easton, D. F., Stratton, M., Narod, S., Goldgar, D., Devilee, P., Bishop, D. T., Weber, B., Lenoir, G., Chang-Claude, J., Sobol, H., Teare, M. D., Struewing, J., Arason, A., Scherneck, S., Peto, J., Rebbeck, T. R., Tonin, P., Neuhausen, S., Barkardottir, R., Eyfjord, J., Lynch, H., Ponder, B. A., Gayther, S. A., & Zelada-Hedman, M. (1998). Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium. Am J Hum Genet, 62, 676-689.
18. Frank, T. S., & Critchfield, G. C. (2002). Hereditary risk of women's cancers. Best Pract Res Clin Obstet Gynaecol, 16, 703-713.
19. Frank, T. S., Deffenbaugh, A. M., Reid, J. E., Hulick, M., Ward, B. E., Lingenfelter, B., Gumpper, K. L., Scholl, T., Tavtigian, S. V., Pruss, D. R., & Critchfield, G. C. (2002). Clinical characteristics of individuals with germline mutations in BRCA1 and BRCA2: Analysis of 10,000 individuals. J Clin Oncol, 20, 1480-1490.
20. Frank, T. S., Manley, S. A., Olopade, O. I., Cummings, S., Garber, J. E., Bernhardt, B., Antman, K., Russo, D., Wood, M. E., Mullineau, L., Isaacs, C., Peshkin, B., Buys, S., Venne, V., Rowley, P. T., Loader, S., Offit, K., Robson, M., Hampel, H., Brener, D., Winer, E. P., Clark, S., Weber, B., Strong, L. C., & Thomas, A. (1998). Sequence analysis of BRCA1 and BRCA2: Correlation of mutations with family history and ovarian cancer risk. J Clin Oncol, 16, 2417-2425.
21. Gao, Q., Neuhausen, S., Cummings, S., Luce, M., & Olopade, O. I. (1997). Recurrent germ-line BRCA1 mutations in extended African American families with early-onset breast cancer. Am J Hum Genet, 60, 1233-1236.
22. Gao, Q., Tomlinson, G., Das, S., Cummings, S., Sveen, L., Fackenthal, J., Schumm, P., & Olopade, O. I. (2000). Prevalence of BRCA1 and BRCA2 mutations among clinic-based African American families with breast cancer. Hum Genet, 107, 186-191.
23. Glanz, K., Croyle, R. T., Chollette, V. Y., & Pinn, V. W. (2003). Cancer-related health disparities in women. Am J Public Health, 93, 292-298.
24. Hartmann, L. C., Sellers, T. A., Schaid, D. J., Frank, T. S., Soderberg, C. L., Sitta, D. L., Frost, M. H., Grant, C. S., Donohue, J. H., Woods, J. E., McDonnell, S. K., Vockley, C. W., Deffenbaugh, A., Cough, F. J., & Jenkins, R. B. (2001). Efficacy of bilateral prophylactic mastectomy in BRCA1 and BRCA2 gene mutation carriers. J Natl Cancer Inst, 93, 1633-1637.
25. Herek, G. M., Gillis, J. R., Glunt, E. K., Lewis, J., Welton, D., & Capitanio, J. P. (1998). Culturally sensitive AIDS educational videos for African American audiences: Effects of source, message, receiver, and context. Am J Community Psychol, 26, 705-743.
26. Isaacs, C., Peshkin, B. N., Schwartz, M., Demarco, T. A., Main, D., & Lerman, C. (2002). Breast and ovarian cancer screening practices in healthy women with a strong family history of breast or ovarian cancer. Breast Cancer Res Treat, 71, 103-112.
27. Jones, B. A., Patterson, E. A., & Calvocoressi, L. (2003). Mammography screening in African American women: Evaluating the research. Cancer, 97, 258-272.
28. Kauff, N. D., Satagopan, J. M., Robson, M. E., Scheuer, L., Hensley, M., Hudis, C. A., Ellis, N. A., Boyd, J., Borgen, P. I., Barakat, R. R., Norton, L., Castiel, M., Nafa, K., & Offit, K. (2002). Risk-reducing salpingo-oophorectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med, 346, 1609-1615.
29. Kinney, A. Y., Bloor, L. E., Mandal, D., Simonsen, S. E., Baty, B. J., Holubkov, R., Seggar, K., Neuhausen, S., & Smith, K. (2005). The impact of receiving genetic test results on general and cancer-specific psychologic distress among members of an African-American kindred with a BRCA1 mutation. Cancer, 104, 2508-2516.
30. Kinney, A. Y., Simonsen, S. E., Baty, B. J., Mandal, D., Neuhausen, S. L., Seggar, K., Holubkov, R., & Smith, K. (2006). Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred. Am J Med Genet A, 140, 813-826.
31. Klaren, H. M., van't Veer, L. J., van Leeuwen, F. E., & Rookus, M. A. (2003). Potential for bias in studies on efficacy of prophylactic surgery for BRCA1 and BRCA2 mutation. J Natl Cancer Inst, 95, 941-947.
32. Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159-174.
33. Lerman, C., Hughes, C., Croyle, R. T., Main, D., Durham, C., Snyder, C., Bonney, A., Lynch, J. F., Narod, S. A., & Lynch, H. T. (2000). Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing. Prev Med, 31, 75-80.
34. Littell, R. C., Milliken, G. A., Stroup, W. W., & Wolfinger, R. (1996). SAS system for mixed models. Cary, NC: SAS.
35. Lodder, L. N., Frets, P. G., Trijsburg, R. W., Meijers-Heijboer, E. J., Klijn, J. G., Seynaeve, C., van Geel, A. N., Tilanus, M. M., Bartels, C. C., Verhoog, L. C., Brekelmans, C. T., Burger, C. W., & Niermeijer, M. F. (2002). One year follow-up of women opting for presymptomatic testing for BRCA1 and BRCA2: Emotional impact of the test outcome and decisions on risk management (surveillance or prophylactic surgery). Breast Cancer Res Treat, 73, 97-112.
36. Meijers-Heijboer, H., Brekelmans, C. T., Menke-Pluymers, M., Seynaeve, C., Baalbergen, A., Burger, C., Crepin, E., van den Ouweland, A. W., van Geel, B., & Klijn, J. G. (2003). Use of genetic testing and prophylactic mastectomy and oophorectomy in women with breast or ovarian cancer from families with a BRCA1 or BRCA2 mutation. J Clin Oncol, 21, 1675-1681.
37. Meijers-Heijboer, H., van Geel, B., van Putten, W. L., Henzen-Logmans, S. C., Seynaeve, C., Menke-Pluymers, M. B., Bartels, C. C., Verhoog, L. C., van den Ouweland, A. M., Niermeijer, M. F., Brekelmans, C. T., & Klijn, J. G. (2001). Breast cancer after prophylactic bilateral mastectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med, 345, 159-164.
38. Miki, Y., Swensen, J., Shattuck-Eidens, D., Futreal, P. A., Harshman, K., Tavtigian, S., Liu, Q., Cochran, C., Bennett, L. M., Ding, W., Bell, R., Rosenthal, J., Hussey, C., Tran, T., McClure, M., Frye, C., Hattier, T., Phelps, R., Haugen-Strano, A., Katcher, H., Yakumo, K., Gholami, Z., Shaffer, D., Stone, S., Bayer, S., Wray, C., Bogden, R., Dayananth, P., Ward, J., Tonin, P., Narod, S., Bristow, P. K., Norris, F. H., Helvering, L., Morrison, P., Rosteck, P., Lai, M., Barrett, J. C., Lewis, C., Neuhausen, S., Cannon-Albright, L., Goldgar, D., Wiseman, R., Kamb, A., & Skolnick, M. H. (1994). A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science, 266, 66-71.
39. O'Malley, M. S., Earp, J. A., Hawley, S. T., Schell, M. J., Mathews, H. F., & Mitchell, J. (2001). The association of race/ethnicity, socioeconomic status, and physician recommendation for mammography: Who gets the message about breast cancer screening? Am J Public Health, 91, 49-54.
40. Offit, K., Robson, M., & Schrag, D. (2001). Prophylactic mastectomy in carriers of BRCA mutations. N Engl J Med, 345, 1498-1499.
41. Orleans, C. T., Boyd, N. R., Bingler, R., Sutton, C., Fairclough, D., Heller, D., McClatchey, M., Ward, J. A., Graves, C., Fleisher, L., & Baum, S. (1998). A self-help intervention for African American smokers: Tailoring cancer information service counseling for a special population. Prev Med, 27, S61-S70.
42. Paskett, E. D., Tatum, C., Rushing, J., Michielutte, R., Bell, R., Foley, K. L., Bittoni, M., & Dickinson, S. (2004). Racial differences in knowledge, attitudes, and cancer screening practices among a triracial rural population. Cancer, 101, 2650-2659.
43. Rauscher, G. H., Hawley, S. T., & Earp, J. A. (2005). Baseline predictors of initiation vs. maintenance of regular mammography use among rural women. Prev Med, 40, 822-830.
44. Rebbeck, T. R., Friebel, T., Lynch, H. T., Neuhausen, S. L., Van't Veer, L., Garber, J. E., Evans, G. R., Narod, S. A., Isaacs, C., Matloff, E., Daly, M. B., Olopade, O. I., & Weber, B. L. (2004). Bilateral Prophylactic Mastectomy Reduces Breast Cancer Risk in BRCA1 and BRCA2 Mutation Carriers: The PROSE Study Group. J Clin Oncol, 22, 1-8.
45. Safran, D. G., Taira, D. A., Rogers, W. H., Kosinski, M., Ware, J. E., & Tarlov, A. R. (1998). Linking primary care performance to outcomes of care. J Fam Pract, 47, 213-220.
46. Scheuer, L., Kauff, N., Robson, M., Kelly, B., Barakat, R., Satagopan, J., Ellis, N., Hensley, M., Boyd, J., Borgen, P., Norton, L., & Offit, K. (2002). Outcome of preventive surgery and screening for breast and ovarian cancer in BRCA mutation carriers. J Clin Oncol, 20, 1260-1268.
47. Schwartz, M. D., Kaufman, E., Peshkin, B. N., Isaacs, C., Hughes, C., DeMarco, T., Finch, C., & Lerman, C. (2003). Bilateral prophylactic oophorectomy and ovarian cancer screening following BRCA1/BRCA2 mutation testing. J Clin Oncol, 21, 4034-4041.
48. Wainberg, S., & Husted, J. (2004). Utilization of screening and preventive surgery among unaffected carriers of a BRCA1 or BRCA2 gene mutation. Cancer Epidemiol Biomark Prev, 13, 1989-1995.