Information-seeking experiences and decision-making roles of Japanese women with breast cancer.

To investigate the information-seeking experiences and decision-making roles of Japanese women with breast cancer, to examine the relationship between information-seeking experiences and decision-making roles, and to explore the factors that influenced taking a more active role than the preferred role during the treatment decision-making process. In a cross-sectional study, women with breast cancer were retrospectively administered the Control Preferences Scale and the Information-Seeking Experience Scale. The Chi-Square test was used to compare differences among individual variables in decision-making roles and information-seeking experiences. Logistic regression analysis was used to explore the factors that influenced taking a more active role than the preferred role. One hundred and four patients with breast cancer participated in the investigation. Eighty-five patients (78%) perceived themselves as having knowledge of breast cancer and most patients (92%) sought information on breast cancer. The preferred roles in decision-making that they reported having before treatment were 18% active, 69% collaborative and 13% passive. The actual roles they perceived having experienced were 27% active, 43% collaborative and 30% passive. Although there was concordance of preferred and actual role for only 59% of the women, most patients reported that they were satisfied with their decision-making. Many women with breast cancer reported negative experiences with information seeking, including wanting more information (49%), expending a lot of effort to obtain the information needed (53%), not having enough time to obtain needed information (55%), frustration during the search for information (44%), concerns about the quality of the information (45%) and difficulty understanding the information received (49%). This study revealed that having a more active actual role than the initial preferred role was associated with emotional expression to the physician, having undergone mastectomy, and the desire for more information. Most women with breast cancer sought information on breast cancer and expressed a preference for a collaborative relationship with physicians in treatment decision-making. Patients who expressed emotion to their physician, wanted more information, and underwent mastectomy were most likely to change their actual decision-making role toward a more active choice.