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Study Finds Many Women Lack Understanding of Their Breast Cancer, Especially Minority Patients

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Key Points

  • In a survey of 500 women with breast cancer, only 56% knew their correct estrogen receptor status, 58% knew their correct HER2 status, 57% knew their correct cancer stage, and 20% knew their correct grade.
  • Hispanic and black women were less likely than white women to know and have correct responses for stage, estrogen receptor status, and HER2 status.
  • The study findings highlight the need to better educate patients about their tumors and to further examine how a patient’s understanding of her disease may contribute to receipt of care, treatment adherence, and disease outcome.

A population-based study of women who had undergone surgery for breast cancer has found that many lacked understanding of the basic characteristics of their disease, including stage, grade, and tumor characteristics. Minority patients were less likely than white patients to have the correct information about their cancers. Improving a patient’s understanding of her cancer and why a particular treatment is important for her individual situation (for example, hormonal therapy for estrogen receptor–positive disease or trastuzumab [Herceptin] for HER2-positive disease), may lead to more informed decisions and better adherence to treatment and outcomes, according to the study researchers. The study by Freedman et al is published in Cancer.

Study Methodology

The researchers conducted a population-based study of 500 women in Northern California who underwent primary surgery for stage 0 through stage III breast cancer diagnosed from 2010 to 2011. Among the 500 participants, 222 were non-Hispanic white, 142 were non-Hispanic black, and 136 were Hispanic.

In telephone surveys, the patients were asked about their breast cancer characteristics, including tumor stage, grade, and hormone receptor status (estrogen receptor, progesterone receptor, and human epidermal growth factor receptor 2). They were also asked about treatments received, as well as questions about their race/ethnicity, educational attainment, household income, insurance coverage, health literacy, and comorbidity.

Study Findings

Overall, 55% of women reported knowing their estrogen receptor status, 33% reported knowing their HER2 status, 82% reported knowing their disease stage, 32% reported knowing their tumor grade, and 14% reported knowing all four tumor characteristics. The researchers found that approximately 56% of the patients reported the correct estrogen receptor status, 58% reported the correct HER2 status, 57% reported the correct stage, 20% reported the correct grade, and 8% correctly answered all four questions.

After adjustment, black and Hispanic women were less likely than white women to know and have correct responses for stage, estrogen receptor status, and HER2 status (all P < .05). In addition, education and health literacy were significantly associated with knowing and having correct information about some characteristics of their tumor, but, “these variables did not eliminate most of the racial/ethnic differences observed,” according to the study abstract.

“Our findings underscore the major deficits in women’s knowledge about their cancers, with minority women less likely than white women to know and report accurate information about their tumor characteristics. These observations highlight the need to better educate our patients about their tumors and to further examine how knowledge about one’s cancer may contribute to receipt of care, adherence, and ultimately, outcomes,” wrote the study authors.

Rachel Freedman, MD, MPH, of Dana-Farber Cancer Institute, is the corresponding author of this study.

Funding was supported by Komen for the Cure Foundation. The authors declared no conflicts of interest.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.


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