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01-08-2009 | Commentary

Risk Perception Among Women at Risk for Hereditary Breast and Ovarian Cancer

Author: Robert Pilarski

Published in: Journal of Genetic Counseling | Issue 4/2009

Abstract

This paper is a summation of selected history and literature on risk perception as it pertains to genetic counseling and testing, with a focus on hereditary breast and ovarian cancer, the area which has seen the greatest focus of research. Risk perception is a complex and incompletely understood concept which seeks to capture the myriad meanings that an individual attaches to the experience of being at increased risk. It is now evident that “risk”, as perceived by the patient, is different from the objective, quantifiable risk estimate often provided to them during genetic counseling. What is also clear is that the complicated set of factors influencing risk perception are not yet well understood, nor are the mechanisms the lead from perceived risk to behavioral change in the patient. In situations where specific behavioral changes such as increased cancer screening are an inherent goal of the genetic risk assessment and counseling process, gaining a better understanding of the specific factors motivating change will be essential.

Antoniou, A. C., Hardy, R., Walker, L., Evans, D. G., Shenton, A., Eeles, R., et al. (2008). Predicting the likelihood of carrying a BRCA1 or BRCA2 mutation: validation of BOADICEA, BRCAPRO, IBIS, Myriad and the Manchester scoring system using data from UK genetics clinics. Journal of Medical Genetics, 45(7), 425–431. doi:https://doi.org/10.1136/jmg.2007.056556.PubMedCrossRef

Berliner, J. L., & Fay, A. M. (2007). Risk assessment and genetic counseling for breast and ovarian cancer: recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling, 16, 241–260. doi:https://doi.org/10.1007/s10897-007-9090-7.PubMedCrossRef

Bermejo-Perez, M. J., Marquez-Calderon, S., & Llanos-Mendez, A. (2007). Effectiveness of preventive interventions in BRCA1/2 gene mutation carriers: a systematic review. Journal of Cancer, 121(2), 225–231.

Bjorvatn, C., Eide, G. E., Hanestad, B. R., Oyen, N., Havik, O. E., & Carlsson, A. (2007). Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. Journal of Genetic Counseling, 16(2), 211–222. doi:https://doi.org/10.1007/s10897-006-9061-4.PubMedCrossRef

Bottorff, J. L., Ratner, P. A., Johnson, J. L., Lovato, C. Y., & Joab, S. A. (1998). Communicating cancer risk information: the challenges of uncertainty. Patient Education and Counseling, 33, 67–81. doi:https://doi.org/10.1016/S0738-3991(97)00047-5.PubMedCrossRef

Butow, P. N., Lobb, E. A., Meiser, B., Barratt, A., & Tucker, K. M. (2003). Psychological outcomes and risk perception after genetic testing and counseling in breast cancer: a systematic review. The Medical Journal of Australia, 178, 77–81.PubMedCrossRef

Chalmers, K., & Thomson, K. (1996). Coming to terms with the risk of breast cancer: perceptions of women with primary relatives with breast cancer. Qualitative Health Research, 6, 256–282. doi:https://doi.org/10.1177/104973239600600207.CrossRef

Chalmers, K., Thomson, K., & Degner, L. F. (1996). Information, support, and communication needs of women with a family history of breast cancer. Cancer Nursing, 19(3), 204–213. doi:https://doi.org/10.1097/00002820-199606000-00007.PubMedCrossRef

D’Agincourt-Canning, L. (2005). The effect of experiential knowledge on construction of risk perception in hereditary breast/ovarian cancer. Journal of Genetic Counseling, 14(1), 55–69. doi:https://doi.org/10.1007/s10897-005-1500-0.PubMedCrossRef

Decruyenaere, M., Evers-Kiebooms, G., Welkenhuysen, M., Denayer, L., & Claes, E. (2000). Cognitive representations of breast cancer, emotional distress and preventive health behaviour: a theoretical perspective. Psycho-Oncology, 9, 528–536. doi:https://doi.org/10.1002/1099-1611(200011/12)9:6<528::AID-PON486>3.0.CO;2-#.PubMedCrossRef

Ekwo, E. E., Seals, B. F., Kim, J.-O., Williamson, R. A., & Hanson, J. W. (1985). Factors influencing maternal estimates of genetic risk. American Journal of Medical Genetics, 20, 491–504. doi:https://doi.org/10.1002/ajmg.1320200310.PubMedCrossRef

Fang, C. Y., Miller, S. M., Malick, J., Babb, J., Engstrom, P. F., & Daly, M. B. (2003). Psychosocial correlates of intention to undergo prophylactic oophorectomy among women with a family history of ovarian cancer. Preventive Medicine, 37, 424–431. doi:https://doi.org/10.1016/S0091-7435(03)00163-4.PubMedCrossRef

Geller, G., Strauss, M., Bernhardt, B. A., & Holtzman, N. A. (1997). “Decoding” informed consent. Insights from women regarding breast cancer susceptibility testing. The Hastings Center Report, 2(2), 28–33. doi:https://doi.org/10.2307/3527625.CrossRef

Gerund, M. A., Aiken, L. S., West, S. G., & Erchull, M. J. (2004). Beyond medical risk: investigating the psychological factors underlying women’s perceptions of susceptibility to breast cancer, heart disease and osteoporosis. Health Psychology, 23(2), 247–258. doi:https://doi.org/10.1037/0278-6133.23.3.247.CrossRef

Granader, E. J., Dwamena, B., & Carlos, R. C. (2008). MRI and mammography surveillance of women at increased risk for breast cancer: recommendations using an evidence-based approach. Academic Radiology, 15(12), 1590–1595. doi:https://doi.org/10.1016/j.acra.2008.06.006.PubMedCrossRef

Heshka, J. T., Palleschi, C., Howley, H., Wilson, B., & Wells, P. S. (2008). A systematic review of perceived risks, psychological and behavioral impacts of genetic testing. Genetics in Medicine, 10(1), 19–32. doi:https://doi.org/10.1097/GIM.0b013e31815f524f.PubMedCrossRef

Hopwood, P. (2000). Breast cancer risk perception: what do we know and understand? Breast Cancer Research, 2, 387–391. doi:https://doi.org/10.1186/bcr83.PubMedCrossRefPubMedCentral

Jacobs, L. A. (2000). An analysis of the concept of risk. Cancer Nursing, 23(1), 12–19. doi:https://doi.org/10.1097/00002820-200002000-00003.PubMedCrossRef

Kash, K. M., Holland, J. C., Halper, M. S., & Miller, D. G. (1992). Psychological distress and surveillance behaviors of women with a family history of breast cancer. Journal of the National Cancer Institute, 84, 24–30. doi:https://doi.org/10.1093/jnci/84.1.24.PubMedCrossRef

Katapodi, M. C., Lee, K. A., Facione, N. C., & Dodd, M. J. (2004). Predictors of perceived breast cancer risk and the relation between perceived risk and breast cancer screening: a meta-analytic review. Preventive Medicine, 38, 388–402. doi:https://doi.org/10.1016/j.ypmed.2003.11.012.PubMedCrossRef

Kenen, R., Ardern-Jones, A., & Eeles, R. (2003). Family stories and the use of heuristics: women from suspected hereditary breast and ovarian cancer (HBOC) families. Sociology of Health & Illness, 25(7), 838–865. doi:https://doi.org/10.1046/j.1467-9566.2003.00372.x.CrossRef

Leonard, C. O., Chase, G. A., & Childs, B. (1972). Genetic counseling: a consumer’s view. The New England Journal of Medicine, 287, 433–439.PubMedCrossRef

Lerman, C., & Schwarz, M. (1993). Adherence and psychological adjustment among women at high risk for breast cancer. Breast Cancer Research and Treatment, 28, 145–155. doi:https://doi.org/10.1007/BF00666427.PubMedCrossRef

Leventhal, H., Meyer, D., & Nerenz, D. (1980). The common sense representation of illness danger. In S. Rachman (Ed.), Contributions to medical psychology. Oxford: Pegamon.

Levy-Lahad, E., & Friedman, E. (2007). Cancer risks among BRCA1 and BRCA2 mutation carriers. British Journal of Cancer, 96, 11–15. doi:https://doi.org/10.1038/sj.bjc.6603535.PubMedPubMedCentralCrossRef

Lippman-Hand, A., & Fraser, F. C. (1979a). Genetic counseling: provision and reception of information. American Journal of Medical Genetics, 3, 113–127. doi:https://doi.org/10.1002/ajmg.1320030202.PubMedCrossRef

Lippman-Hand, A., & Fraser, F. C. (1979b). Genetic counseling — The postcounseling period: I. Parents’ perceptions of uncertainty. American Journal of Medical Genetics, 4, 51–71. doi:https://doi.org/10.1002/ajmg.1320040108.PubMedCrossRef

Lippman-Hand, A., & Fraser, F. C. (1979c). Genetic counseling — The postcounseling period: II. Making reproductive choices. American Journal of Medical Genetics, 4, 73–87. doi:https://doi.org/10.1002/ajmg.1320040109.PubMedCrossRef

Lippman-Hand, A., & Fraser, F. C. (1979d). Genetic counseling: parents’ responses to uncertainty. Birth Defects Original Article Series, XV(5C), 325–339.

Lloyd, S., Watson, M., Waites, B., Meyer, L., Eeles, R., Ebbs, S., et al. (1996). Familial breast cancer: a controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counseling. British Journal of Cancer, 74, 482–487.PubMedPubMedCentralCrossRef

Marteau, T. M., & Lerman, C. (2001). Genetic risk and behavioural change. British Medical Journal, 322, 1056–1059. doi:https://doi.org/10.1136/bmj.322.7293.1056.PubMedCrossRefPubMedCentral

Marteau, T. M., & Weinman, J. (2006). Self-regulation and the behavioral response to DNA risk information: a theoretical analysis and framework for future research. Social Science & Medicine, 62, 1360–1368. doi:https://doi.org/10.1016/j.socscimed.2005.08.005.CrossRef

McCaul, K. D., Branstetter, A. D., O’Donnell, S. M., Jacobson, K., & Quinlan, K. B. (1998). A descriptive study of breast cancer worry. Journal of Behavioral Medicine, 21, 565–579. doi:https://doi.org/10.1023/A:1018748712987.PubMedCrossRef

McAllister, M. (2003). Personal theories of inheritance, coping strategies, risk perception and engagement in hereditary non-polyposis colon cancer families offered genetic testing. Clinical Genetics, 64, 179–189. doi:https://doi.org/10.1034/j.1399-0004.2003.00133.x.PubMedCrossRef

Meiser, B., Butow, P., Friedlander, M., Schnieden, V., Gattas, M., Kirk, J., et al. (2000). Intention to undergo prophylactic bilateral mastectomy in women at increased risk of developing hereditary breast cancer. Journal of Clinical Oncology, 18, 2250–2257.PubMedCrossRef

Metcalfe, K. A., & Narod, S. A. (2002). Breast cancer risk perception among women who have undergone prophylactic bilateral mastectomy. Journal of the National Cancer Institute, 94, 1564–1569.PubMedCrossRef

National Comprehensive Cancer Centers. (2008). NCCN Clinical Practice Guidelines in Oncology: Breast Cancer. v.2.2008. Retrieved August 1, 2008 from https://doi.org/www.nccn.org/professionals/physician_gls/PDF/breast.pdf

Palmer, C. G. S., & Sainfort, F. (1993). Toward a new conceptualization and operationalization of risk perception within the genetic counseling domain. Journal of Genetic Counseling, 2(4), 275–294. doi:https://doi.org/10.1007/BF00961576.PubMedCrossRef

Parsons, E., & Atkinson, P. (1992). Lay constructions of genetic risk. Sociology of Health & Illness, 14, 437–455. doi:https://doi.org/10.1111/1467-9566.ep10493083.CrossRef

Peters, E., McCaul, K. D., Stefanek, M., & Nelson, W. (2006). A heuristic approach to understanding cancer risk perception: contributions from judgment and decision-making research. Annals of Behavioral Medicine, 31(1), 45–52. doi:https://doi.org/10.1207/s15324796abm3101_8.PubMedCrossRef

Price, M. A., Butow, P. N., Lo, S. K., & Wilson, J. (2007). Predictors of cancer worry in unaffected women from high risk breast cancer families: risk perception is not the primary issue. Journal of Genetic Counseling, 16, 635–644. doi:https://doi.org/10.1007/s10897-007-9105-4.PubMedCrossRef

Rees, G., Fry, A., & Cull, A. (2001). A family history of breast cancer: women’s experiences from a theoretical perspective. Social Science & Medicine, 52, 1433–1440. doi:https://doi.org/10.1016/S0277-9536(00)00248-3.CrossRef

Rosenstock, I. M. (1966). Why people use health services. The Milbank Memorial Fund Quarterly, 44, 94–127. doi:https://doi.org/10.2307/3348967.CrossRef

Schwartz, M. D., Lerman, C. L., Miller, S. M., Daly, M., & Masny, A. (1995). Coping disposition, perceived risk, and psychological distress among women at increased risk for ovarian cancer. Health Psychology, 14(3), 232–235. doi:https://doi.org/10.1037/0278-6133.14.3.232.PubMedCrossRef

Shiloh, S. (1994). Heuristics and biases in health decision-making: Their expression in genetic counseling. In L. Heath, R. S. Tindale, J. Edwards, E. J. Posavac, F. B. Bryant, E. Henderson-King, Y. Suarez-Balcazar, & J. Myers (Eds.), Applications of heuristics and biases to social issues. London: Plenum Press.

Shiloh, S., & Ilan, S. (2005). To test or not to test? Moderators of the relationship between risk perceptions and interest in predictive genetic testing. Journal of Behavioral Medicine, 28(5), 467–479. doi:https://doi.org/10.1007/s10865-005-9017-4.PubMedCrossRef

Sivell, S., Elwyn, G., Gaff, C. L., Clarke, A. J., Iredale, R., Shaw, C., et al. (2008). How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision-making: systematic review. Journal of Genetic Counseling, 17, 30–63. doi:https://doi.org/10.1007/s10897-007-9132-1.PubMedCrossRef

Slovic, P., Fischoff, B., & Lichtenstein, S. (1982). Fact versus fears: understanding perceived risk. In D. Kahneman, P. Slovic, & A. Tversky (Eds.), Judgment under uncertainty: heuristics and biases (pp. 464–489). Cambridge: Cambridge University Press.

van Dooren, S., Rijnsburger, A. J., Seynaeve, C., Duivenvoorden, H. J., Essink-Bot, M.-L., & Tilanus-Linthorst, M. M. A. (2004). Psychological distress in women at increased risk for breast cancer: the role of risk perception. European Journal of Cancer, 40, 2056–2063. doi:https://doi.org/10.1016/j.ejca.2004.05.004.PubMedCrossRef

Watson, M., Duvivier, V., Wade Walsh, M., Ashley, S., Davidson, J., Papaikonomou, M., et al. (1998). Family history of breast cancer: what do women understand and recall about their genetic risk? Journal of Medical Genetics, 35, 731–738. doi:https://doi.org/10.1136/jmg.35.9.731.PubMedPubMedCentralCrossRef

Wertz, D. C., Sorenson, J. R., & Heeren, T. C. (1986). Clients’ interpretation of risks provided in genetic counseling. American Journal of Human Genetics, 39, 253–264.PubMedPubMedCentral

Title: Risk Perception Among Women at Risk for Hereditary Breast and Ovarian Cancer
Author: Robert Pilarski
Publication date: 01-08-2009
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 4/2009
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-009-9227-y

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Risk Perception Among Women at Risk for Hereditary Breast and Ovarian Cancer

Abstract

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