Abstract
The objective of this paper is first to describe the different strategies used to communicate risks to patients in the field of cancer or genetics, to review their effectiveness, and to summarise the state of the art of this practice in particular, in cancer genetics. The target audience is health care professionals involved in the communication of cancer risks, and genetic risks of breast/ovarian or colorectal cancer in particular. The methods include a review of the literature (Medline, Pascal, PsycInfo, Embase) by a panel of researchers and clinicians (cancer geneticists, epidemiologists, health psychologists, sociologists) in the context of a European Project on risk communication. We highlight practices that have been shown to be effective in the context of health psychology research and those being still under consideration for use in routine practice. In conclusion, this paper adds clinical relevance to the research evidence. We propose specific steps that could be integrated in standard clinical practice based on current evidence for their usefulness/effectiveness.
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References
Kessler S : Psyche and helix: psychological aspects of genetic counseling. New York: Wiley, 2000.
Armstrong K, Eisen A, Weber B : Assessing the risk of breast cancer. N Engl J Med 2000; 342: 564–571.
Emery J, Lucassen A, Murphy M : Common hereditary cancers and implications for primary care. Lancet 2001; 358: 56–63.
Rimer BK, Glassman B : Is there a use for tailored print communications in cancer risk communications? J Natl Cancer Inst Monogr 1999; 25: 140–148.
Edwards A, Elwyn G, Mulley A : Explaining risks: turning numerical data into meaningful pictures. BMJ 2002; 324: 827–830.
Vlek C : Risk assessment, risk perception and decision making about courses of action involving genetic risks. Birth Defects Orig Articles Ser 1987; 23: 171–207.
Decruyenaere M, Evers-Kiebooms G, Welkenhuysen M, Denayer L, Claes E : Cognitive representations of breast cancer, emotional distress and preventive health behaviour: a theoretical perspective. Psycho-oncology 2000; 9: 528–536.
Kreuter MW : Dealing with competing and conflicting risks in cancer communication. J Natl Cancer Inst Monogr 1999; 25: 27–35.
Maibach E : Cancer risk communication – what we need to learn. J Natl Cancer Inst Monogr 1999; 25: 179–181.
Weinstein ND : What does it mean to understand a risk? Evaluating risk comprehension. J Natl Cancer Inst Monogr 1999; 15–20.
Raffle AE : Information about screening – is it to achieve high uptake or to ensure informed choice? Health Expect 2001; 4: 92–98.
de Jong MM, Nolte IM, te Meerman GJ et al: Genes other than BRCA1 and BRCA2 involved in breast cancer susceptibility. J Med Genet 2002; 39: 225–242.
Burke W, Press N, Pinsky L : BRCA1 and BRCA2: a small part of the puzzle. J Natl Cancer Inst 1999; 91: 904–905.
Phillips KA, Glendon G, Knight JA : Putting the risk of breast cancer in perspective. N Engl J Med 1999; 340: 141–144.
Emmons K, Kalkbrenner K, Klar N, Light T, Schneider K, Garber J : Behavioral risk factors among women presenting for genetic testing. Cancer Epidemiol Biomark Prevent 2000; 9: 89–94.
Schwartz LM, Woloshin S, Welch HG : Risk communication in clinical practice: putting cancer in context. J Natl Cancer Inst Monogr 1999; 124–133.
Struewing JP, Hartge P, Wacholder S et al: The risk of cancer associated with specific mutations or BRCA1 and BRCA2 among Ashkenazi Jews. N Engl J Med 1997; 336: 1401–1407.
Ford D, Easton DF, Stratton M et al: Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. Am J Hum Genet 1998; 62: 676–689.
Eisinger F, Alby N, Bremond A et al: Recommendations for medical management of hereditary breast and ovarian cancer: The French National Ad Hoc Committee. Ann Oncol 1998; 9: 939–950.
Rothman AJ, Kiviniemi MT : Treating people with information: an analysis and review of approaches to communicating health risk information. J Natl Cancer Inst Monogr 1999; 44–51.
Lipkus IM, Crawford Y, Fenn K, Biradavolu M, Binder RA, Marcus A, Mason M : Testing different formats for communicating colorectal cancer risk. J Health Commun 1999; 4: 311–324.
Lipkus IM, Hollands JG : The visual communication of risk. J Natl Cancer Inst Monogr 1999; 25: 149–163.
Schapira M, Nattinger A, McHorney C : Frequency or probability? A qualitative study of risk communication formats used in health care. Med Decis Making 2001; 21: 459–467.
Kong A, Barnett GO, Mosteller F : How medical professionals evaluate expressions of probability. N Engl J Med 1986; 315: 740–744.
Salovey P : Persuasion for the purpose of cancer risk reduction: a discussion. J Natl Cancer Inst Monogr 1999; 25: 119–122.
Bottorff JL, Ratner PA, Johnson JL, Lovato CY, Joab AA : Communicating cancer risk information: the challenges of uncertainty. Patient Educ Counsel 1998; 33: 67–81.
Hallowell N, Murton F : The value of written summaries of genetic consultations. Patient Educ Couns 1998; 35: 27–34.
Wade WM : Women receiving genetic counseling for breast cancer risk: cancer worry, psychological distress, and risk recall accuracy. Disser Abstr Int 2001; 61: 3865.
Evans DGR, Blair V, Greenhalgh R, Hopwood P, Howell A : The impact of genetic counselling on risk perception in women with a family history of breast cancer. Br J Cancer 1994; 70: 934–938.
Cull A, Miller H, Portefield T et al: The use of videotaped information in cancer genetic counselling: a randomized evaluation study. Br J Cancer 1998; 77: 830–837.
Maibach EW, Davis SW, Ter Maat J, Rivera N : Promoting cancer prevention and screening: the impact of the Cancer Information Service. Part 7. J Health Commun 1998; 3: 97–108.
Strecher VJ, Greenwood T, Wang C, Dumont D : Interactive multimedia and risk communication. J Natl Cancer Inst Monogr 1999; 134–139.
O'Connor AM, Fiset V, DeGrasse C et al: Decision aids for patients considering options affecting cancer outcomes: evidence of efficacy and policy implications. J Natl Cancer Inst Monogr 1999; 67–80.
Green MJ, McInerney AM, Biesecker BB, Fost N : Education about genetic testing for breast cancer susceptibility: patient preferences for a computer program or genetic counselor. Am J Mved Genet 2001; 103: 24–31.
Green MJ, Biesecker BB, McInerney AM, Mauger D, Fost N : An interactive computer program can effectively educate patients about genetic testing for breast cancer susceptibility. Am J Med Genet 2001; 103: 16–23.
O'Connor AM, Stacey D, Rovner D et al: Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2001; 25: 140–148.
Gerrard M, Gibbons FX, Reis-Bergan M : The effect of risk communication on risk perceptions; the significance of individual differences. J Natl Cancer Inst Monogr 1999; 94–100.
Hallowell N, Statham H, Murton F, Green J, Richards M : ‘Talking about chance’: the presentation of risk information during genetic counseling for breast and ovarian cancer. J Genet Counsel 1997; 6: 269–286.
Lobb EA, Butow PN, Meiser B et al: Women's preferences and consultants' risk communication in familial breast cancer consultations: impact on patient outcomes. J Med Genet 2003; 25.
Wilkniss S : Communication of cancer risk information in genetic counseling: does format of presentation affect understanding? Disser Abstr Int B 2000; 61: 3296.
Marteau TM, Saidi G, Goodburn S, Lawton J, Michie S, Bobrow M : Numbers or words? A randomized controlled trial of presenting screen negative results to pregnant women. Prenat Diagn 2000; 20: 714–718.
Fischhoff, B : Why (cancer) risk communication can be hard. J Natl Cancer Inst Monogr 1999; 25: 7–13.
Edwards A, Hood K, Matthews E et al: The effectiveness of one-to-one risk communication interventions in health care: a systematic review. Med Decis Making 2000; 20: 290–297.
Bryant H, Brasher P : Risks and probabilities of breast cancer: short-term versus lifetime probabilities. Can Med Assoc J 1994; 150: 211–216.
Johnson B, Slovic P : Presenting uncertainty in health risk assessment: initial studies of its effects on risk perception and trust. Risk Anal 1995; 15: 485–494.
Geller G, Tambor ES, Chase GA, Holtzman NA : Measuring physicians' tolerance for ambiguity and its relationship to their reported practices regarding genetic testing. Med Care 1993; 31: 989–1001.
Williams T, Clarke T, Borland R : Effects of message framing on breast cancer related beliefs and behaviors: the role of mediating factors. J Appl Soc Psychol 2001; 31 (Special issue): 925–950.
Slovic P, Fischoff P : Facts versus fears: understanding perceived risk. in Kahneman D, Slovic P, Tversky A (eds) Judgment under uncertainty: heuristics and biases. Cambridge: Cambridge University Press, 1982, pp 464–489.
Shiloh S, Sagi M : Effect of framing on the perception of genetic recurrence risks. Am J Med Genet 1989; 33: 130–135.
Jasper JD, Goel R, Einarson A, Gallo M, Koren G : Effects of framing on teratogenic risk perception in pregnant women. Lancet 2001; 358: 1237–1238.
Vernon SW : Risk perception and risk communication for cancer screening behaviors: a review. J Nat Cancer Inst Monogr 1999; 25: 101–109.
Marteau T, Lerman C : Genetic risk and behavioral change. BMJ 2001; 322: 1056–1059.
Emmons KM, Koch-Weser S, Atwood K, Conboy L, Rudd R, Colditz G : A qualitative evaluation of the Harvard Cancer Risk Index. J Health Commun 1999; 4: 181–193.
Lerman C, Biesecker B, Benkendorf JL et al: Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. J Natl Cancer Inst 1997; 89: 148–157.
Brain K, Gray J, Norman P et al: Randomized trial of a specialist genetic assessment service for familial breast cancer. J Natl Cancer Inst 2000; 92: 1345–1351.
Woloshin S, Schwartz LM, Black WC, Welch HG : Women's perceptions of breast cancer risk: how you ask matters. Med Decis Making 1999; 19: 221–229.
Meiser B, Halliday J : What is the impact of genetic counselling in women at increased risk of developing hereditary breast cancer? A meta-analytic review. Soc Sci Med 2002; 54: 1463–1470.
Hopwood P : Breast cancer risk perception: what do we know and understand? Breast Cancer Res 2000; 2: 323–327.
Aspinwall LG : Introduction of section: persuasion for the purpose of cancer risk reduction: understanding responses to risk communications. J Natl Cancer Inst Monogr 1999; 25: 88–93.
Croyle RT, Lerman C : Risk communication in genetic testing for cancer susceptibility. J Natl Cancer Inst Monogr 1999; 25: 59–66.
McBride C, Halabi S, Bepler G, Lyna P, McIntyre L, Lipkus I, Albright J : Maximizing the motivational impact of feedback of lung cancer susceptibility on smokers' desire to quit. J Health Commun 2000; 5: 229–241.
Lipkus IM, Biradavolu M, Fenn K, Keller P, Rimer BK : Informing women about their breast cancer risks: truth and consequences. Health Commun 2001; 13: 205–226.
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This research has been supported by the European Community, FP5, Contract QLG7-CT-2001-30236.
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Julian-Reynier, C., Welkenhuysen, M., Hagoel, L. et al. Risk communication strategies: state of the art and effectiveness in the context of cancer genetic services. Eur J Hum Genet 11, 725–736 (2003). https://doi.org/10.1038/sj.ejhg.5201037
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DOI: https://doi.org/10.1038/sj.ejhg.5201037
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