Advertisement

Journal of Community Genetics

, Volume 2, Issue 4, pp 211–221 | Cite as

A pilot study of knowledge and interest of genetic counseling and testing for hereditary breast and ovarian cancer syndrome among Puerto Rican women

  • Susan T. VadaparampilEmail author
  • Gwendolyn P. Quinn
  • Julie Dutil
  • Marieva Puig
  • Teri L. Malo
  • Jessica McIntyre
  • Rossybelle Perales
  • Euna M. August
  • Zuheily Closser
Original Article

Abstract

This study explored baseline levels of knowledge and attitude toward genetic testing (GT) for hereditary breast and ovarian cancer among Puerto Rican women. A secondary aim was to evaluate whether these factors differed between respondents in Puerto Rico and Tampa. Puerto Rican women with a personal or family history of breast or ovarian cancer who live in Puerto Rico (n = 25) and Tampa (n = 20) were interviewed. Both groups were interested in obtaining GT; women living in Puerto Rico were more likely to report they would get GT within 6 months (p = 0.005). The most commonly cited barrier was cost; the most commonly cited facilitator was provider recommendation. There was no difference in overall knowledge between Tampa (M = 5.15, SD = 1.63) and Puerto Rico (M = 5.00, SD = 1.87) participants (p = 0.78). Involving health care providers in recruitment and highlighting that GT may be available at minimal or no cost in the USA and Puerto Rico may facilitate participation.

Keywords

Genetic counseling Genetic testing Hereditary cancer Hispanic Puerto Rico 

Notes

Acknowledgments

Funding for this project was provided by Grant 1 R03 HG003887 from the National Human Genome Research Institute and by NIH U56 10-14352-03-07. The work contained within this publication was supported in part by the Survey Methods Core Facility at Moffitt Cancer Center. We would also like to thank Ms. Carmen Pacheco and Mr. Juan Carlos Vega for their assistance with recruitment in Puerto Rico.

Conflict of interest

The authors declare that they have no conflict of interest.

References

  1. Anton-Culver H, Cohen P, Gildea M, Ziogas A (2000) Characteristics of BRCA1 mutations in a population-based case series of breast and ovarian cancer. European J Cancer 36(10):1200–1208CrossRefGoogle Scholar
  2. Berrigan D, Dodd K, Troiano RP, Reeve BB, Ballard-Barbash R (2006) Physical activity and acculturation among adult Hispanics in the United States. Res Q Exerc Sport 77(2):147–157Google Scholar
  3. US Census Bureau (2000) US census 2000 demographic profiles: Puerto Rico. US Census BureauGoogle Scholar
  4. Chen S, Iversen ES, Friebel T, Finkelstein D, Weber BL, Eisen A et al (2006) Characterization of BRCA1 and BRCA2 mutations in a large United States sample. J Clin Oncol 24(6):863–871PubMedCrossRefGoogle Scholar
  5. Daly MB (2004) Tailoring breast cancer treatment to genetic status: the challenges ahead. J Clin Oncol 22(10):1776–1777PubMedCrossRefGoogle Scholar
  6. Flores G (2000) Culture and the patient-physician relationship: achieving cultural competency in health care. J Pediatr 136(1):14–23PubMedCrossRefGoogle Scholar
  7. Ford D, Easton DF, Bishop DT, Narod SA, Goldgar DE (1994) Risks of cancer in BRCA1-mutation carriers. Breast Cancer Linkage Consortium. Lancet 343(8899):692–695PubMedCrossRefGoogle Scholar
  8. Gonzalez Burchard E, Borrell LN, Choudhry S, Naqvi M, Tsai HJ, Rodriguez-Santana JR et al (2005) Latino populations: a unique opportunity for the study of race, genetics, and social environment in epidemiological research. Am J Public Health 95(12):2161–2168PubMedCrossRefGoogle Scholar
  9. Granda-Cameron C (1999) The experience of having cancer in Latin America. Cancer Nurs 22(1):51–57PubMedCrossRefGoogle Scholar
  10. Guest G, Bunce A, Johnson L, Akumatey B, Adeokun L (2005) Fear, hope and social desirability bias among women at high risk for HIV in West Africa. J Fam Plann Reprod Health Care 31(4):285–287PubMedCrossRefGoogle Scholar
  11. Heck JE, Franco R, Jurkowski JM, Sheinfeld Gorin S (2008) Awareness of genetic testing for cancer among United States Hispanics: the role of acculturation. Commun Genet 11(1):36–42CrossRefGoogle Scholar
  12. Hopwood P, Shenton A, Lalloo F, Evans DG, Howell A (2001) Risk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer. J Med Genet 38(2):139–142Google Scholar
  13. SAS Institute (2003) SAS Institute (version 9.1). SAS Institute, CaryGoogle Scholar
  14. Jacobellis J, Martin L, Engel J, VanEenwyk J, Bradley L, Kassim S et al (2004) Genetic testing for breast and ovarian cancer susceptibility: evaluating direct-to-consumer marketing–Atlanta, Denver, Raleigh-Durham, and Seattle, 2003. Morb Mortal Wkly Rep 53(27):603–606Google Scholar
  15. 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. J Am Med Association 298(24):2869–2876CrossRefGoogle Scholar
  16. Kieran S, Loescher LJ, Lim KH (2007) The role of financial factors in acceptance of clinical BRCA genetic testing. Genet Test 11(1):101–110PubMedCrossRefGoogle Scholar
  17. 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):178–186PubMedCrossRefGoogle Scholar
  18. 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):543–551PubMedCrossRefGoogle Scholar
  19. Kvale S (1996) Interviews: an introduction to qualitative research interviewing. Sage, LondonGoogle Scholar
  20. 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):385–392PubMedCrossRefGoogle Scholar
  21. Lerman C, Narod S, Schulman K, Hughes C, Gomez-Caminero A, Bonney G et al (1996) BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes. JAMA 275(24):1885–1892Google Scholar
  22. Lerman C, Biesecker B, Benkendorf JL, Kerner J, Gomez-Caminero A, Hughes C et al (1997a) Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Natl Cancer Inst 89(2):148–157Google Scholar
  23. Lerman C, Schwartz MD, Lin TH, Hughes C, Narod S, Lynch HT (1997b) The influence of psychological distress on use of genetic testing for cancer risk. J Consult Clin Psych 65(3):414–420Google Scholar
  24. 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):2328–2335PubMedCrossRefGoogle Scholar
  25. Miki Y, Swensen J, Shattuck-Eidens D, Futreal PA, Harshman K, Tavtigian S et al (1994) A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science 266(5182):66–71PubMedCrossRefGoogle Scholar
  26. Mouchawar J, Hensley-Alford S, Laurion S, Ellis J, Kulchak-Rahm A, Finucane ML et al (2005a) Impact of direct-to-consumer advertising for hereditary breast cancer testing on genetic services at a managed care organization: a naturally-occurring experiment. Genet Med 7(3):191–197PubMedCrossRefGoogle Scholar
  27. Mouchawar J, Laurion S, Ritzwoller DP, Ellis J, Kulchak-Rahm A, Hensley-Alford S (2005b) Assessing controversial direct-to-consumer advertising for hereditary breast cancer testing: reactions from women and their physicians in a managed care organization. Am J Managed Care 11(10):601–608Google Scholar
  28. Mullineaux LG, Castellano TM, Shaw J, Axell L, Wood ME, Diab S et al (2003) Identification of germline 185delAG BRCA1 mutations in non-Jewish Americans of Spanish ancestry from the San Luis Valley, Colorado. Cancer 98(3):597–602PubMedCrossRefGoogle Scholar
  29. Orom H, Kiviniemi MT, Underwood W 3rd, Ross L, Shavers VL (2010) Perceived cancer risk: why is it lower among nonwhites than whites? Canc Epidemiol Biomarkers Prev 19(3):746–754CrossRefGoogle Scholar
  30. Pasick RJ, Barker JC, Otero-Sabogal R, Burke NJ, Joseph G, Guerra C (2009) Intention, subjective norms, and cancer screening in the context of relational culture. Health Educ Behav 36(5 Suppl):91S–110SPubMedCrossRefGoogle Scholar
  31. 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):760–770Google Scholar
  32. Powe BD (1996) Cancer fatalism among African-Americans: a review of the literature. Nurs Outlook 44(1):18–21Google Scholar
  33. Powe BD, Weinrich S (1999) An intervention to decrease cancer fatalism among rural elders. Oncol Nurs Forum 26(3):583–588Google Scholar
  34. Quinn GP, McIntyre J, Vadaparampil ST (2011) Preferences for hereditary breast and ovarian cancer information among Mexican, Cuban and Puerto Rican women at risk. Public Health Genomics 14(4-5):248–258Google Scholar
  35. Ramirez AG, Talavera GA, Marti J, Penedo FJ, Medrano MA, Giachello AL et al (2006) Redes En Accion. Increasing Hispanic participation in cancer research, training, and awareness. Cancer 107(8 Suppl):2023–2033PubMedCrossRefGoogle Scholar
  36. Ricker C, Lagos V, Feldman N, Hiyama S, Fuentes S, Kumar V et al (2006) If we build it…will they come?–establishing a cancer genetics services clinic for an underserved predominantly Latina cohort. J Genet Couns 15(6):505–514PubMedCrossRefGoogle Scholar
  37. Ricker CN, Hiyama S, Fuentes S, Feldman N, Kumar V, Uman GC et al (2007) Beliefs and interest in cancer risk in an underserved Latino cohort. Prev Med 44(3):241–245PubMedCrossRefGoogle Scholar
  38. Robson M, Svahn T, McCormick B, Borgen P, Hudis CA, Norton L et al (2005) Appropriateness of breast-conserving treatment of breast carcinoma in women with germline mutations in BRCA1 or BRCA2: a clinic-based series. Cancer 103(1):44–51PubMedCrossRefGoogle Scholar
  39. Ropka ME, Wenzel J, Phillips EK, Siadaty M, Philbrick JT (2006) Uptake rates for breast cancer genetic testing: a systematic review. Cancer Epidemiol Biomarkers Prev 15(5):840–855PubMedCrossRefGoogle Scholar
  40. Salari K, Choudhry S, Tang H, Naqvi M, Lind D, Avila PC et al (2005) Genetic admixture and asthma-related phenotypes in Mexican American and Puerto Rican asthmatics. Genet Epidemiol 29(1):76–86PubMedCrossRefGoogle Scholar
  41. Schwartz MD, Lerman C, Brogan B, Peshkin BN, Isaacs C, DeMarco T et al (2005) Utilization of BRCA1/BRCA2 mutation testing in newly diagnosed breast cancer patients. Cancer Epidemiol Biomarkers Prev 14(4):1003–1007PubMedCrossRefGoogle Scholar
  42. Semega J (2009) Median household income for states: 2007 and 2008 american community surveys. US Census BureauGoogle Scholar
  43. Steidel AG, Contreras JM (2003) A new familism scale for Latina populations. Hispanic J Behav Sci 25(3):312–330Google Scholar
  44. 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. Commun Genet 1(4):213–222CrossRefGoogle Scholar
  45. Vadaparampil ST, Wideroff L, Breen N, Trapido E (2006) 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 15(4):618–623PubMedCrossRefGoogle Scholar
  46. Vadaparampil ST, Azzarello L, Pickard J, Jacobsen PB (2007) Intention to obtain genetic testing for melanoma among first degree relatives of melanoma patients. Am J Health Educ 38(3):148–155Google Scholar
  47. Vadaparampil S, McIntyre J, Quinn GP (2010a) Awareness, perceptions, and provider recommendation related to genetic testing for hereditary breast cancer risk among at-risk Hispanic women: similarities and variations by sub-ethnicity. J Genet Couns 19(6):618–629PubMedCrossRefGoogle Scholar
  48. Vadaparampil ST, Quinn GP, Small BJ, McIntyre J, Loi CA, Closser Z et al (2010b) A pilot study of hereditary breast and ovarian knowledge among a multiethnic group of Hispanic women with a personal or family history of cancer. Genet Test Mol Biomarkers 14(1):99–106PubMedCrossRefGoogle Scholar
  49. Weitzel JN, Lagos V, Blazer KR, Nelson R, Ricker C, Herzog J et al (2005) Prevalence of BRCA mutations and founder effect in high-risk Hispanic families. Cancer Epidemiol Biomarkers Prev 14(7):1666–1671PubMedCrossRefGoogle Scholar
  50. Weitzel JN, Lagos VI, Herzog JS, Judkins T, Hendrickson B, Ho JS et al (2007) Evidence for common ancestral origin of a recurring BRCA1 genomic rearrangement identified in high-risk Hispanic families. Cancer Epidemiol Biomarkers Prev 16(8):1615–1620PubMedCrossRefGoogle Scholar
  51. Wideroff L, Vadaparampil ST, Breen N, Croyle RT, Freedman AN (2003) Awareness of genetic testing for increased cancer risk in the year 2000 National Health Interview Survey. Commun Genet 6(3):147–156CrossRefGoogle Scholar
  52. Wooster R, Bignell G, Lancaster J, Swift S, Seal S, Mangion J et al (1995) Identification of the breast cancer susceptibility gene BRCA2. Nature 378(6559):789–792PubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag 2011

Authors and Affiliations

  • Susan T. Vadaparampil
    • 1
    • 2
    Email author
  • Gwendolyn P. Quinn
    • 1
    • 2
  • Julie Dutil
    • 3
  • Marieva Puig
    • 4
  • Teri L. Malo
    • 1
  • Jessica McIntyre
    • 1
  • Rossybelle Perales
    • 1
  • Euna M. August
    • 1
  • Zuheily Closser
    • 1
  1. 1.Health Outcomes and Behavior ProgramMoffitt Cancer CenterTampaUSA
  2. 2.Department of Oncologic Sciences, College of MedicineUniversity of South FloridaTampaUSA
  3. 3.Ponce School of MedicinePoncePuerto Rico
  4. 4.University of Puerto RicoSan JuanPuerto Rico

Personalised recommendations