A new qualitative study by Alsacia Pacsi-Sepulveda, Rachel Shelton, Carmen Rodriguez, Arielle Coq, and Parisa Tehranifar that explored the understanding of, and reactions to, New York State’s breast density notification language was recently published in the journal Cancer. In 2013, New York State enacted legislation requiring that women receive a written letter if a mammogram reveals they have heterogeneously or extremely dense breasts. The letter is intended to notify them of their density status, increased risk of breast cancer, and lower sensitivity of mammography screening. A paragraph of mandated text containing this information is specified in the legislation.
The researchers asked 24 self-identified Hispanic women who had a history of dense breasts about their understanding of the NYS mandated breast density information, directly after reading them the mandated notification text. All respondents had received screening mammograms since the law went into effect, but most did not recall receiving notification and showed low levels of understanding of breast density.
Using inductive content analysis, the researchers identified five overarching themes that arose in their interviews, including: confusion about, and lack of understanding of, what ‘dense breasts’ means; the perception that dense breasts are an abnormal and serious condition; and worries about breast cancer risk and the need for additional tests for screening. Additional themes found were a “reliance on faith and acceptance of destiny” – that dense breasts are something predetermined, and that the information learned in the notification was important and actionable – that more diligent screening or additional testing was important for them.
Importantly, respondents also provided recommendations for communicating breast density information, stating that health care providers were the best source of this information, but that written informational materials, videos, ads, or community programs, were also recommended.
The researchers suggest that revising the notification text to lower the literacy level and include a definition of breast density or other clarifying information could assist women in their understanding of this notification.
In Feb 2019, a US federal law was passed requiring the FDA to develop mandatory reporting language that must be included in patient and provider mammography reports across the US. [source densebreast-info.org]. The minimum information that is required includes:
- The effect of breast density in masking the presence of breast cancer on a mammogram
- The qualitative assessment of [breast density by] the provider who interprets the mammogram, and
- A reminder to patients that individuals with dense breast tissue should talk with their providers if they have any questions or concerns about their summary.
Though the mandated information is specified, specific language and text to be used is not. The authors’ findings and recommendations have implications for informing the specific language used in notification letters directed towards patients to ensure that the information is understood and actionable.