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Laypersons' Responses to the Communication of Uncertainty Regarding Cancer Risk Estimates

Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland, hanp{at}mail.nih.gov

William M. P. Klein, PhD

Department of Psychology, University of Pittsburgh, Pittsburgh, Pennsylvania

Thomas C. Lehman, MA

Center for Social Marketing and Behavior Change, Academy for Educational Development, Washington, DC

Holly Massett, PhD

Operations Research Office, National Cancer Institute, Bethesda, Maryland

Simon C. Lee, MPH, PhD

Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland

Andrew N. Freedman, PhD

Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland

Objective . To explore laypersons' responses to the communication of uncertainty associated with individualized cancer risk estimates and to identify reasons for individual differences in these responses. Design. A qualitative study was conducted using focus groups. Participants were informed about a new colorectal cancer risk prediction model, and presented with hypothetical individualized risk estimates using presentation formats varying in expressed uncertainty (range v. point estimate). Semistructured interviews explored participants' responses to this information. Participants and Setting . Eight focus groups were conducted with 48 adults aged 50 to 74 residing in 2 major US metropolitan areas, Chicago, IL and Washington, DC. Purposive sampling was used to recruit participants with a high school or greater education, some familiarity with information technology, and no personal or immediate family history of cancer. Results . Participants identified several sources of uncertainty regarding cancer risk estimates, including missing data, limitations in accuracy and source credibility, and conflicting information. In comparing presentation formats, most participants reported greater worry and perceived risk with the range than with the point estimate, consistent with the phenomenon of ``ambiguity aversion.'' However, others reported the opposite effect or else indifference between formats. Reasons suggested by participants' responses included individual differences in optimism and motivations to reduce feelings of vulnerability and personal lack of control. Perceptions of source credibility and risk mutability emerged as potential mediating factors. Conclusions. Laypersons' responses to the communication of uncertainty regarding cancer risk estimates differ, and include both heightened and diminished risk perceptions. These differences may be attributable to personality, cognitive, and motivational factors.

Key Words: uncertainty • risk • ambiguity • cancer • risk prediction models.

This version was published on May 1, 2009

Medical Decision Making, Vol. 29, No. 3, 391-403 (2009)
DOI: 10.1177/0272989X08327396


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