Patients' resistance to risk information in genetic counseling for BRCA1/2

Abstract

Background: Risk information from health care providers is relevant to and used in nearly all medical decisions. Patients often misunderstand their risks, yet little is known about the risk perception that patients derive from risk communications with health care providers. This study examines patients' risk perceptions following communication with health care providers during genetic counseling about the risks of breast cancer and BRCA1/2 mutations.

Methods: A prospective, longitudinal study was conducted from October 2002 to February 2004 of women who received genetic counseling. The women completed a survey before their counseling and a telephone interview in the week after the counseling. Main outcome measures included change from precounseling in risk perception and accuracy of postcounseling risk perception (relative to actual risk information communicated).

Results: A total of 108 women agreed to participate in the study. The women's postcounseling risk perceptions were significantly lower than their precounseling risk perceptions (breast cancer: 17%, P<.001; mutation: 13%, P<.001) but were significantly higher than the actual risk information communicated (breast cancer: 19%, P<.001; mutation: 24%, P<.001). Accuracy of breast cancer risk perception but not mutation risk perception was associated with precounseling worry (P = .04), even after adjusting for trait anxiety (P = .01).

Conclusions: This research demonstrates patients' resistance to risk information. Inappropriately high risk perception derived from a risk communication with a health care provider can lead patients to make different, and potentially worse, medical decisions than they would with an accurate risk perception and to be unnecessarily distressed about their risk.