Journal of Community Genetics

, Volume 1, Issue 2, pp 63–71

Updating and refining a study brochure for a cancer registry-based study of BRCA mutations among young African American breast cancer patients: lessons learned

Original article

Abstract

The aim of the present study was to update, refine, and evaluate a study brochure to promote participation in a population-based study of BRCA mutations among AA women with a personal history of early-onset breast cancer. A multi-step approach was used to develop this brochure and included: (1) feedback from community members (through a Community Advisory Panel (CAP)) to develop and refine the study brochure, (2) pilot testing of materials with the target audience, and (3) review of pilot testing results with the CAP. Based on the feedback received at each step, the study brochure was refined. In phase 1, the major changes included emphasizing the concept of leaving a legacy and family, using the terms Black and women of color, and use of patient vignettes and photos. In phase 2, attraction and cultural acceptability were identified as two areas for improvement in the study brochure. These results demonstrate that involvement of community members and target study population in the development of a study-specific brochure can provide invaluable feedback to optimize recruitment strategies. This approach can be readily adapted to develop study recruitment materials for individuals from a variety of cultural and ethnic backgrounds.

Keywords

Genetics education African American BRCA Study recruitment 

References

  1. Armstrong K, Micco E, Carney A, Stopfer J, Putt M (2005) Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. Jama 293(14):1729–1736CrossRefPubMedGoogle Scholar
  2. Curry L, Jackson J (2003) The science of including older ethnic and racial group participants in health-related research. Gerontologist 43(1):15–17PubMedGoogle Scholar
  3. Daly M, Axilbund JE, Bryant E, Buys S, Eng C, Friedman S et al. (2006) The NCCN genetic/familial high-risk assessment: breast and ovarian clinical practice guideline, version 1.2006. Available at http://nccn.org/physician_gls/indiex.html, accessed November 19th, 2006. To view most recent and complete version of guideline, to www.nccn.org, retrieved 19th November, 2006
  4. Doak CC, Doak LG, Root JH (1996) Teaching patients with low literacy skills. J.B. Lippincott, PhiladelphiaGoogle Scholar
  5. Fackenthal JD, Sveen L, Gao Q, Kohlmeir EK, Adebamowo C, Ogundiran TO et al (2005) Complete allelic analysis of BRCA1 and BRCA2 variants in young Nigerian breast cancer patients. J Med Genet 42(3):276–281CrossRefPubMedGoogle Scholar
  6. Frank TS, Deffenbaugh AM, Reid JE, Hulick M, Ward BE, Lingenfelter B et al (2002) Clinical characteristics of individuals with germline mutations in BRCA1 and BRCA2: analysis of 10, 000 individuals. J Clin Oncol 20(6):1480–1490CrossRefPubMedGoogle Scholar
  7. Gao Q, Adebamowo CA, Fackenthal J, Das S, Sveen L, Falusi AG et al (2000) Protein truncating BRCA1 and BRCA2 mutations in African women with pre-menopausal breast cancer. Hum Genet 107(2):192–194CrossRefPubMedGoogle Scholar
  8. Haffty B, 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. J Med Genet 43:133–137CrossRefPubMedGoogle Scholar
  9. Halbert CH, Brewster K, Collier A, Smith C, Kessler L, Weathers B et al (2005) Recruiting African American women to participate in hereditary breast cancer research. J Clin Oncol 23(31):7967–7973CrossRefPubMedGoogle Scholar
  10. Halbert CH, Kessler L, Stopfer JE, Domchek S, Wileyto EP (2006) Low rates of acceptance of BRCA1 and BRCA2 test results among African American women at increased risk for hereditary breast–ovarian cancer. Genet Med 8(9):576–582CrossRefPubMedGoogle Scholar
  11. Hartmann LC, Schaid DJ, Woods JE, Crotty TP, Myers JL, Arnold PG et al (1999) Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. N Engl J Med 340(2):77–84CrossRefPubMedGoogle Scholar
  12. Hartmann LC, Sellers TA, Schaid DJ, Frank TS, Soderberg CL, Sitta DL et al (2001) Efficacy of bilateral prophylactic mastectomy in BRCA1 and BRCA2 gene mutation carriers. J Natl Cancer Inst 93(21):1633–1637CrossRefPubMedGoogle Scholar
  13. 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 Educ Couns 32(1–2):51–62CrossRefPubMedGoogle Scholar
  14. John EM, Miron A, Gong G, Phipps AI, Felberg A, Li FP et al (2007) Prevalence of pathogenic BRCA1 mutation carriers in 5 US racial/ethnic groups. Jama 298(24):2869–2876CrossRefPubMedGoogle Scholar
  15. Kanaan Y, Kpenu E, Utley K, Adams-Campbell L, Dunston GM, Brody LC et al (2003) Inherited BRCA2 mutations in African Americans with breast and/or ovarian cancer: a study of familial and early onset cases. Hum Genet 113(5):452–460CrossRefPubMedGoogle Scholar
  16. Kinney AY, Choi YA, DeVellis B, Millikan R, Kobetz E, Sandler RS (2000) Attitudes toward genetic testing in patients with colorectal cancer. Cancer Pract 8(4):178–186CrossRefPubMedGoogle Scholar
  17. Kinney AY, Croyle RT, Dudley WN, Bailey CA, Pelias MK, Neuhausen SL (2001) Knowledge, attitudes, and interest in breast–ovarian cancer gene testing: a survey of a large African-American kindred with a BRCA1 mutation. Prev Med 33(6):543–551CrossRefPubMedGoogle Scholar
  18. Lerman C, Seay J, Balshem A, Audrain J (1995) Interest in genetic testing among first-degree relatives of breast cancer patients. Am J Med Genet 57(3):385–392CrossRefPubMedGoogle Scholar
  19. Malone KE, Daling JR, Doody DR, Hsu L, Bernstein L, Coates RJ 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 Res 66(16):8297–8308CrossRefPubMedGoogle Scholar
  20. Mefford HC, Baumbach L, Panguluri RC, Whitfield-Broome C, Szabo C, Smith S et al (1999) Evidence for a BRCA1 founder mutation in families of West African ancestry. Am J Hum Genet 65(2):575–578CrossRefPubMedGoogle Scholar
  21. Metcalfe K, Lynch HT, Ghadirian P, Tung N, Olivotto I, Warner E et al (2004) Contralateral breast cancer in BRCA1 and BRCA2 mutation carriers. J Clin Oncol 22(12):2328–2335CrossRefPubMedGoogle Scholar
  22. Nanda R, Schumm LP, Cummings S, Fackenthal JD, Sveen L, Ademuyiwa F et al (2005) Genetic testing in an ethnically diverse cohort of high-risk women: a comparative analysis of BRCA1 and BRCA2 mutations in American families of European and African ancestry. Jama 294(15):1925–1933CrossRefPubMedGoogle Scholar
  23. Olopade OI, Fackenthal JD, Dunston G, Tainsky MA, Collins F, Whitfield-Broome C (2003) Breast cancer genetics in African Americans. Cancer 97(1 Suppl):236–245CrossRefPubMedGoogle Scholar
  24. Pal T, Permuth-Wey J, Holtje T, Sutphen R (2004) BRCA1 and BRCA2 mutations in a study of African American breast cancer patients. Cancer Epidemiol Biomark Prev 13(11 Pt 1):1794–1799Google Scholar
  25. Pal T, Vadaparampil S, Betts J, Miree C, Li S, Narod SA (2008) BRCA1/2 in high-risk African American women with breast cancer: providing genetic testing through various recruitment strategies. Genet Test 12(3):401–407CrossRefPubMedGoogle Scholar
  26. Panguluri RC, Brody LC, Modali R, Utley K, Adams-Campbell L, Day AA et al (1999) BRCA1 mutations in African Americans. Hum Genet 105(1–2):28–31CrossRefPubMedGoogle Scholar
  27. Parra-Medina D, Wilcox S, Thompson-Robinson M, Sargent R, Will JC (2004) A replicable process for redesigning ethnically relevant educational materials. J Womens Health (Larchmt) 13(5):579–588CrossRefGoogle Scholar
  28. Pegoraro RJ, Moodley M, Rom L, Chetty R, Moodley J (2003) P53 codon 72 polymorphism and BRCA 1 and 2 mutations in ovarian epithelial malignancies in black South Africans. Int J Gynecol Cancer 13(4):444–449CrossRefPubMedGoogle Scholar
  29. Permuth-Wey J, Vadaparampil ST, Kinney A, Rhumps A, Pal T (2010) Development of a culturally tailored genetic counseling booklet about hereditary breast and ovarian cancer for black women. Am J Med Genet 152A(4):836–845Google Scholar
  30. Peters JA, Vadaparampil ST, Kramer J, Moser RP, Court LJ, Loud J et al (2006) Familial testicular cancer: interest in genetic testing among high-risk family members. Genet Med 8(12):760–770CrossRefPubMedGoogle Scholar
  31. Rivers D, Vadaparampil S, Rumphs A, Betts J, Permuth-Wey J, Pal T (2007) Development of a lay brochure introducing genetic testing and counseling for BRCA1/2 in women of color. Paper presented at the American Association for Cancer Research—The Science of Cancer Health Disparities In Racial/Ethnic Minorities and the Medically Underserved Meeting, Atlanta, GAGoogle Scholar
  32. Royal C, Baffoe-Bonnie A, Kittles R, Powell I, Bennett J, Hoke G et al (2000) Recruitment experience in the first phase of the African American Hereditary Prostate Cancer (AAHPC) Study. Ann Epidemiol 10(8 Suppl):S68–S77CrossRefPubMedGoogle Scholar
  33. Sawaya L (2004) Maximize response rates in physician surveysGoogle Scholar
  34. Shen D, Wu Y, Subbarao M, Bhat H, Chillar R, Vadgama JV (2000) Mutation analysis of BRCA1 gene in African-American patients with breast cancer. J Natl Med Assoc 92(1):29–35PubMedGoogle Scholar
  35. Sigelman L, Tuch S, Martin J (2005) What's in a name: preferenc for “Black” versus “African American” among Americans of African descent. Public Opin Q 69(3):429–438CrossRefGoogle Scholar
  36. Simon MS, Petrucelli N (2009) Hereditary breast and ovarian cancer syndrome: the impact of race on uptake of genetic counseling and testing. Meth Mol Biol 471:487–500CrossRefGoogle Scholar
  37. Thompson HS, Valdimarsdottir HB, Duteau-Buck C, Guevarra J, Bovbjerg DH, Richmond-Avellaneda C et al (2002) Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women. Cancer Epidemiol Biomark Prev 11(12):1579–1585Google Scholar
  38. Ulrich CM, Kristal AR, White E, Hunt JR, Durfy SJ, Potter JD (1998) Genetic testing for cancer risk: a population survey on attitudes and intention. Community Genet 1(4):213–222CrossRefPubMedGoogle Scholar
  39. Vadaparampil ST, Azzarello L, Pickard J, Jacobsen PB (2007) Intention to obtain genetic testing for melanoma among first degree relatives of melanoma patients. American Journal of Health Education 38(3):148–155Google Scholar
  40. Vadaparampil S, Quinn G, Giyishi A, Pal T (2008) Development and pilot testing of a brochure to increase awareness of inherited breast cancer in Black women. Paper presented at the Association for Cancer Research Frontiers in Cancer Prevention Meeting, Washington, DCGoogle Scholar

Copyright information

© Springer-Verlag 2010

Authors and Affiliations

  1. 1.Division of Cancer Prevention and ControlMoffitt Cancer CenterTampaUSA
  2. 2.Department of Oncologic Science, College of MedicineUniversity of South FloridaTampaUSA

Personalised recommendations