28 January 2015
A study published in the journal Cancer found that many women lack basic knowledge about their breast cancer. Researchers at the Dana Farber Cancer Institute in Boston surveyed 500 women treated between 2010-2011 for Stage 0 – III breast cancer in Northern California. Women were asked about 4 tumor characteristics – estrogen receptor (ER) status, Her2/neu status, tumor grade and disease stage.
They found that overall, 55% reported knowing their ER status, 33% reported knowing their Her2/neu status, 82% reported knowing their disease stage, and 32% reported knowing their tumor grade. 14% reported knowing all characteristics, and 14% reported knowing none.
However, patient perception of knowledge did not reflect actual knowledge. Only 8% answered all questions correctly. They also found that African American and Hispanic women had a lower rate of stated knowledge and correct answers. Differences in education and health literacy were associated with less knowledge about one’s own condition, but controlling for these factors did not eliminate the observed differences for minority participants.
The findings are important for several reasons. As the authors noted in their manuscript, “having knowledge about one’s health conditions or the risk of developing health conditions can promote healthy behaviors and treatment adherence. Better general knowledge about cancer is associated with cancer screening, earlier stage at presentation and survival, and enhanced satisfaction with care.” “Improving a patient’s understanding about why a particular treatment is important to her individual situation may lead to more informed decisions and better adherence to treatment plans.”
While it is generally felt that breast cancer patients are highly educated about their disease, this study shows that as physicians, we have a long way to go. We need to do a better job assessing a patient’s understanding of their disease and treatment options, and we need to design and participate in research studies that evaluate new and innovative ways to explain complicated information to a newly diagnosed breast cancer patient taking into account education level as well as racial, ethnic and cultural differences. Our discussions need to be tailored to the individual patient. And patients should feel empowered to ask questions and obtain clarification in order to fully understand the treatment recommendations and the rational behind those recommendations.