PURPOSE: To assess physicians' understanding of breast cancer patients' knowledge and preferences, including their perception of risk, their preference for the format of risk communication, and their willingness to undergo prevention interventions.

METHODS: Consecutive women with a history of LCIS, atypical hyperplasia, or a family history of breast or ovarian cancer but without prior personal breast cancer were recruited from the Cancer Risk and Prevention Clinic at the Dana-Farber Cancer Institute in Boston, MA. Patient data were collected through pre and post-visit questionnaires and interviews. Patients' perceived breast cancer risk, preferred format for risk communication, and risk thresholds for prevention interventions were assessed. Physicians were surveyed immediately after patient visits to ascertain their understanding of the same outcomes, including physician understanding of patient perceived risk, physician assessment of patient preferred risk communication format, and physician prediction of patient prevention choices. Physician-reported risk communication format used in the visit was also collected. Estimated risk for breast cancer was calculated from medical chart data using the Gail model.

RESULTS: Of the 183 consented patients, 155 (83%) completed all questionnaires and interviews. Patients were seen by a total of 6 physicians all of whom contributed data to the study. The median patient perceived breast cancer risk pre-visit was 60% which declined by 11% post-visit, but remained 40% higher than risk estimated by the Gail model. Physicians overestimated patients' perceived risk pre-visit (median risk 70%), and underestimated patients' perceived risk post-visit (median risk 30%). Patient preferences for the format in which they received risk information was matched by physicians 37% of the time. Physicians correctly identified patient preferences for prevention interventions in 40% of the scenarios presented.

CONCLUSIONS: Despite a wide variety of patients and physician-patient interactions, physicians have a high level of misunderstanding about their patients' knowledge about breast cancer and their preferences regarding decision making. Physicians' knowledge of patient risk perception is oftentimes inaccurate, making it difficult to identify when patients are making poorly informed decisions. The limited use of patient-preferred formats for risk communication is likely to impede physicians' ability to optimally counsel women. And physicians' lack of understanding regarding patients' preferences for prevention intervention points to the importance of improved physician-patient communication to guide decision making and ensure concordance between outcomes and preferences.