Knowledge and Prevention Practices Before Breast Cancer Diagnosis in a Cross-Sectional Study Among Survivors: Impact on Patients’ Involvement in the Decision Making Process

Disparities exist in breast cancer knowledge and education, which tend to influence symptom interpretation and decision to seek screening/care. The present project describes a cohort of women’s experiences, knowledge, and health behavior prior to and after a diagnosis of breast cancer. It also studies how knowledge and demographic factors are associated with level of involvement participants had in the treatment of their breast cancer. Women >18 years who have been diagnosed and treated for breast cancer within 10 years were recruited in Pittsburgh, PA, through the Healthy People Cohort Registry, a database of volunteers from the community, and Brooklyn, NY, through the American Cancer Society breast cancer survivor database. Subsequent to institutional ethics approval, a questionnaire was administered by mail and through an electronic interactive format. The study included 124 breast cancer survivors, one-quarter of whom were of African ancestry. Roughly half of the women indicated that their overall knowledge of breast cancer was limited before diagnosis; no significant association between overall knowledge before diagnosis and stage at diagnosis or an active role of the patient in treatment choices was observed. Two-third of the women reported using personal research on internet, books, and other media to increase knowledge on breast cancer after diagnosis; the improvement of knowledge was associated with an active role in therapy choice. White women’s self report of breast cancer knowledge prior to diagnosis was higher than that of women of African origin (p = 0.03); the latter experienced more delays in getting results about the diagnosis (p = 0.002), in starting treatment (p = 0.03), and in having treatment available at local facilities (p = 0.007) than white women. White women were more likely to improve their knowledge through their own research (p = 0.08) and through the contribution of their physician (p = 0.06) than women of African origin.There is still a need for addressing breast cancer knowledge among black women, and improvement in physician emotional support and in their contribution to the patient’s knowledge is necessary. These efforts may have a positive impact on breast cancer knowledge among black women in the US.