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“Why take it if you don’t have anything?” breast cancer risk perceptions and prevention choices at a public hospital

  • Populations At Risk
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Abstract

BACKGROUND: Despite advances in breast cancer risk assessment and risk reduction technologies, little is still known about how high-risk women make sense of their risk and assess prevention options, particularly among minority and low-income women. Qualitative methods explore the complex meanings and logics of risk and prevention that quantitative approaches overlook.

OBJECTIVE: This study examined how women attending a high risk breast cancer clinic at a public hospital conceptualize their breast cancer risk and think about the prevention options available to them.

METHODS: Semi-structured interviews were used to gather data from 33 high-risk women (75% African American) between May and August 2004. Interview transcripts were analyzed for recurrent themes and patterns.

RESULTS: Despite general awareness of their objective risk status, many women in this study reported they did not feel “high risk” because they lacked signs and symptoms of cancer. Risk was described as an experienced acute problem rather than a statistical possibility. Women also frequently stated that thinking about cancer might cause it to happen and so it is better not to “dwell on it.” While screening was welcomed, women were generally skeptical about primary prevention. In particular, preventive therapies were perceived to cause problems and were only acceptable as treatment options for a disease.

CONCLUSIONS: The body of ideas about risk and prevention expressed by this population differ from the medical model. These findings have implications for risk perception research as well as for the efficacy of risk communication and prevention counseling in clinical contexts.

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References

  1. Armstrong K. Leading the way in breast cancer screening and prevention. J Gen Intern Med. 2004;10:390–1.

    Article  Google Scholar 

  2. Sugg Skinner C, Rawl SM, Moser BK, et al. Impact of the cancer risk intake system on patient-clinician discussions of tamoxifen, genetic counseling, and colonoscopy. J Gen Intern Med. 2005;20:360–5.

    Article  Google Scholar 

  3. Sakorafas GH, Krespis E, Pavlakis G. Risk estimation for breast cancer development; a clinical perspective. Surg Oncol. 2002;10:183–92.

    Article  PubMed  Google Scholar 

  4. King MC, Marks JH, Mandell JB. Breast and ovarian cancer risks due to inherited mutations in BRCA1 and BRCA2. Science. 2003;302:643–6.

    Article  PubMed  CAS  Google Scholar 

  5. Robson ME. Clinical considerations in the management of individuals at risk for hereditary breast and ovarian cancer. Cancer Control. 2002;9:457–65.

    PubMed  Google Scholar 

  6. U.S. Preventive Services Task Force. Chemoprevention of breast cancer: recommendations and rationale. Ann Intern Med. 2002;137:56–58.

    Google Scholar 

  7. Schrag D, Kuntz KM, Garber JE, Weeks JC. Life expectancy gains from cancer prevention strategies for women with breast cancer and BRCA1 or BRCA2 mutations. JAMA. 2000;283:617–24.

    Article  PubMed  CAS  Google Scholar 

  8. Grann VR, Jacobson JS, Thomason D, Hershman D, Heitjan DF, Neugut AI. Effect of prevention strategies on survival and quality-adjusted survival of women with BRCA1/2 mutations: an updated decision analysis. J Clin Oncol. 2002;20:2520–9.

    Article  PubMed  Google Scholar 

  9. Haas JS, Kaplan CP, Gregorich SE, Pérez-Stable EJ, des Jarlais G. Do physicians tailor their recommendations for breast cancer risk reduction based on patient’s risk? J Gen Intern Med. 2004;19:302–9.

    Article  PubMed  Google Scholar 

  10. Hopwood P. Breast cancer risk perception: what do we know and understand? Breast Cancer Res. 2000;2:387–91.

    Article  PubMed  CAS  Google Scholar 

  11. Lerman C, Hughes C, Croyle RT, et al. Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing. Prev Med. 2000;31:75–80.

    Article  PubMed  CAS  Google Scholar 

  12. Hughes C, Lerman C, Lustbader E. Ethnic differences in risk perception among women at increased risk for breast cancer. Breast Cancer Res Treat. 1996;40:25–35.

    Article  PubMed  CAS  Google Scholar 

  13. Donovan KA, Tucker DC. Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a sociodemographically diverse sample. J Behav Med. 2000;23:15–36.

    Article  PubMed  CAS  Google Scholar 

  14. Eisinger F, Julian-Reynier C, Sobol H, Stoppa-Lyonnet D, Lasset C, Nogues C. Acceptability of prophylactic mastectomy in cancer-prone women. JAMA. 2000;283:202–3.

    Article  PubMed  CAS  Google Scholar 

  15. Ang P, Yong K-Y, Tan K-S. Low acceptance of prophylactic surgery and chemoprevention even in individuals at increased risk of cancer in Singapore. ASCO Annual Meeting 2003. Proc Am Soc Clin Oncol. 2003;22:540 (abstr 2174).

    Google Scholar 

  16. Meiser B, Eisenbruch M, Barlow-Stewart K, Tucker K, Steel Z, Goldstein D. Cultural aspects of cancer genetics: setting a research agenda. J Med Genet. 2001;38:425–9.

    Article  PubMed  CAS  Google Scholar 

  17. Sanders T, Campbell R, Sharp D, Donovan J. Risk constructions among people who have a first-degree relative with cancer. Health Risk Soc. 2003;5:53–69.

    Article  Google Scholar 

  18. Bouchard L, Blancquaert I, Eisinger F, et al. Prevention and genetic testing for breast cancer: variations in medical decisions. Soc Sci Med. 2004;58:1085–96.

    Article  PubMed  Google Scholar 

  19. Julian-Reynier C, Eisinger F, Evans G, Foulkes W, Sobol H. Variation in prophylactic surgery decisions. Lancet. 2000;356:1687.

    Article  PubMed  CAS  Google Scholar 

  20. 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;51:107–14.

    Article  PubMed  Google Scholar 

  21. Hallowell N, Jacobs I, Richards M, Mackay J, Gore M. Surveillance or surgery? A description of the factors that influence high risk premenopausal women’s decisions about prophylactic oophorectomy. J Med Genet. 2001;38:683–91.

    Article  PubMed  CAS  Google Scholar 

  22. Eisinger F, Geller G, Burke W, Holtzman NA. Cultural basis for differences between US and French clinical recommendations for women at increased risk of breast and ovarian cancer. Lancet. 1999;353:919–20.

    Article  PubMed  CAS  Google Scholar 

  23. Chalmers K, Thomson K. Coming to terms with the risk of breast cancer: perceptions of women with primary relatives with breast cancer. Qual Health Res. 1996;6:256–82.

    Article  Google Scholar 

  24. Lannin DR, Mathews HF, Mitchell J, Swanson MS. Impacting cultural attitudes in African-American women to decrease breast cancer mortality. Am J Surg. 2002;184:418–23.

    Article  PubMed  Google Scholar 

  25. Kerner JF. Breast cancer prevention and control among the medically underserved. Breast Cancer Res Treat. 1996;40:1–9.

    Article  PubMed  CAS  Google Scholar 

  26. Guidry JJ, Matthews-Juarez P, Copeland VA. Barriers to breast cancer control for African-American women: the interdependence of culture and psychosocial issues. Cancer. 2003;97:318–23.

    Article  PubMed  Google Scholar 

  27. Marcus AC. New directions for risk communication research: a discussion with additional suggestions. J Natl Cancer Inst Monogr. 1999;25:35–42.

    PubMed  Google Scholar 

  28. Stefanek M, Hartmann L, Nelson W. Risk-reduction mastectomy: clinical issues and research needs. J Natl Cancer Inst. 2001;93:1297–306.

    Article  PubMed  CAS  Google Scholar 

  29. Crabtree BF, Miller WL. Doing Qualitative Research in Primary Care: Multiple Strategies. Thousand Oaks, CA: Sage Publications; 1992.

    Google Scholar 

  30. Willms DG, Best JA, Taylor DW, et al. A systematic-approach for using qualitative methods in primary prevention research. Med Anthropol Quart. 1990;4:391–409.

    Article  Google Scholar 

  31. Rajaram SS, Rashidi A. Minority women and breast cancer screening: the role of cultural explanatory models. Prev Med. 1998;27:757–64.

    Article  PubMed  CAS  Google Scholar 

  32. Gregg J, Curry RH. Explanatory models for cancer among African-American women at two Atlanta neighborhood health centers: the implications for a cancer screening program. Soc Sci Med. 1994;39:519–26.

    Article  PubMed  CAS  Google Scholar 

  33. Dein S. Explanatory models of and attitudes towards cancer in different cultures. Lancet Oncol. 2004;5:119–24.

    Article  PubMed  Google Scholar 

  34. Davison C, Smith GD, Frankl S. Lay epidemiology and the prevention paradox-the implications of coronary candidacy for health-education. Sociology Health Illness. 1991;13:1–19.

    Article  Google Scholar 

  35. Strauss A, Corbin J Grounded theory methodology—an overview. In: Denzin NK, Lincoln YS, eds. Handbook of Qualitative Research. Thousand Oaks, CA: Sage Publications; 1994:273–85.

    Google Scholar 

  36. Kenen R, Arden-Jones A, Eeles RA. Living with chronic risk: healthy women with a family history of breast/ovarian cancer. Health Risk Soc. 2003;5:315–31.

    Article  Google Scholar 

  37. Martino S, Costantino J, McNabb M, et al. The role of selective estrogen receptor modulators in the prevention of breast cancer: comparison of the clinical trials. Oncologist. 2004;9:116–25.

    Article  PubMed  CAS  Google Scholar 

  38. Skolbekken JA. The risk epidemic in medical journals. Soc Sci Med. 1995;40:291–305.

    Article  PubMed  CAS  Google Scholar 

  39. Jacobs LA. An analysis of the concept of risk. Cancer Nurs. 2000;23:12–9.

    Article  PubMed  CAS  Google Scholar 

  40. Mathews HF, Lannin DR, Mitchell JP. Coming to terms with advanced breast cancer: black women’s narratives from eastern North Carolina. Soc Sci Med. 1994;38:789–800.

    Article  PubMed  CAS  Google Scholar 

  41. Hoffman-Goetz L, Mills SL. Cultural barriers to cancer screening among African American women: a critical review of the qualitative literature. Womens Health. 1997;3:183–201.

    PubMed  CAS  Google Scholar 

  42. Tessaro I, Eng E, Smith J. Breast cancer screening in older African-American women: qualitative research findings. Am J Health Promot. 1994;8:286–92.

    PubMed  CAS  Google Scholar 

  43. Matthews AK, Cummings S, Thompson S, List M, Olopade OI. Genetic testing of African Americans for susceptibility to inherited cancers: use of focus groups to determine factors contributing to participation. J Psych Oncol. 2000;18:1–19.

    Article  Google Scholar 

  44. Davison C, Frankel S, Smith GD. The limits of lifestyle: re-assessing “fatalism” in the popular culture of illness prevention. Soc Sci Med. 1992;34:675–85.

    Article  PubMed  CAS  Google Scholar 

  45. Sturges JE, Hanrahan KJ. Comparing telephone and face-to-face qualitative interviewing: a research note. Qualitative Research. 2004;4:107–18.

    Article  Google Scholar 

  46. Burt J, Caelli K, Moore K, Anderson M. Radical prostatectomy: men’s experiences and postoperative needs. J Clin Nurs. 2005;14:883–90.

    Article  PubMed  Google Scholar 

  47. Tomaino-Brunner C, Freda MC, Runowicz CD. “I hope I don’t have cancer”: colposcopy and minority women. Oncol Nurs Forum. 1996;23:39–44.

    PubMed  CAS  Google Scholar 

  48. Baty BJ, Kinney AY, Ellis SM. Developing culturally sensitive cancer genetics communication aids for African Americans. Am J Med Genet. 2003;118A:146–55.

    Article  Google Scholar 

Download references

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Correspondence to Diane S. Lauderdale PhD.

Additional information

This research was funded by a pre-doctoral grant from the Breast Cancer Research Program, Department of Defense Congressionally Directed Medical Research Programs (Award #W81XWH-04-1-0333). Dr. Olopade is a Doris Duke Distinguished Clinical Scientist.

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Salant, T., Ganschow, P.S., Olopade, O.I. et al. “Why take it if you don’t have anything?” breast cancer risk perceptions and prevention choices at a public hospital. J Gen Intern Med 21, 779–785 (2006). https://doi.org/10.1111/j.1525-1497.2006.00461.x

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  • DOI: https://doi.org/10.1111/j.1525-1497.2006.00461.x

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