Background
Understanding tumor characteristics is likely important but little is known about breast cancer patients’ knowledge of their disease. We assessed women's knowledge about their tumor characteristics, whether racial/ethnic disparities in knowledge exist, and whether education and health literacy influenced associations.
Methods
We surveyed a population-based cohort of women in Northern California with stage 0-III breast cancer diagnosed during 2010-2011 (participation rate=68.5%). Among 500 respondents (222 non-Hispanic white, 142 non-Hispanic black, and 136 Hispanic women), we examined racial/ethnic differences in knowledge about tumor characteristics (estrogen receptor [ER], Human Epidermal Growth Factor Receptor 2 [HER2], stage, grade) and correctness of tumor information (with California Cancer Registry data for confirmation). We used multivariate logistic regression to assess the probability of (a) ‘knowing’ tumor stage, receptor status, and grade and (b) ‘correctly answering’ tumor information by race/ethnicity. In sequential models, we examined the impact of education and health literacy on findings.
Results
Overall, 32%-82% reported knowing each of the 4 tumor characteristics and 20%-58% correctly reported these characteristics. After adjustment, black and Hispanic women were less likely than white women to know and have correct responses for stage, ER, and HER2 (all P<.05). Education and health literacy were significantly associated with knowing and having correct information for some characteristics, but these variables did not eliminate most of the racial/ethnic differences observed.
Conclusions
Knowledge about one's breast cancer was generally poor, particularly for minority women. Further study of how this knowledge may impact receipt of care and outcomes is warranted.