Breast Cancer Prevention: Patient Decision Making and Risk Communication in the High Risk Setting


  • Preliminary results of this work have been presented at the 2005 annual conference of the Society for Medical Decision Making. Elissa M. Ozanne and Eve Wittenberg contributed equally to this work.

Address correspondence and reprint requests to: Elissa M. Ozanne, PhD, Institute for Technology Assessment at Massachusetts General Hospital, 101 Merrimac Street, 10th Floor, Boston, MA 02114, USA, or e-mail:


Abstract:  The purpose of this study was to investigate prevention decision making among women at high risk for breast cancer, including patient preferences for preventive interventions, patient understanding of disease risk, and patient preferences for risk communication methods, and the corresponding physician understanding of these factors. A prospective interview and survey study was conducted of consecutive new patients seen at a cancer risk and prevention clinic and their physicians. One hundred and forty-six of 217 eligible patients participated and completed all components of the study (67%), and they were seen by a four physicians. Women’s preferences for prevention intervention varied widely across women but were stable across time. Physicians were very often unable to predict their patients’ preferences for prevention efforts. Patients overestimated their risk of disease, and physicians overestimated the decrease in perceived risk resulting from counseling (p < 0.001). As risk stratification for breast cancer improves, and prevention options become more tolerable, it becomes increasingly important to appropriately counsel women considering such options. This study provides insight into the decision making process of women at high risk for breast cancer and highlights the importance of addressing patient preferences for interventions and risk perception during risk assessment and counseling consultations.