Published on April 26, 2016, in the Journal of the American Medical Association (JAMA), a new study ‘Content, Readability, and Understandability of Dense Breast Notifications by State’ reveals that the dense breast notifications (DBNs) along with the screened mammogram results which set the precedent for identifying breast cancer, vary from state to state and are hard to read and understand causing confusion over the interpretation of results.
Breast density is linked with a reduction in mammographic sensitivity and specificity and an increase in the tumor size leading to worsened prognosis. Laws have been passed on women being notified of the implications surrounding breast density and if need be provided information regarding supplemental screening and further testing.
Some 24 states were taken into account and were analyzed for their legislative laws concerning DBNs which had been effective since January 1st, 2016, except Delaware. Nancy Kressin, the lead author of the study, says, ‘We found widespread discordance between states’ DBN readability and corresponding basic literacy levels.’
With the exception of just three states, results show that ‘most had readability at the high school level or above, poor understandability, and discontinuity with states’ average literacy’. Results clearly display how this would lead to misunderstandings between the women when trying to understand the information given to them, leading to decisions such as taking or not taking preventive measures to get further screening, radiation or biopsies done.
To get a better idea of what sort of variation was present, the breast density notification from New Jersey reads like this, ‘If your mammogram demonstrates that you have dense breast tissue which could hide small abnormalities, you might benefit from supplementary screening tests which can include a breast ultrasound screening or a breast MRI examination, or both, depending on your individual risk factors.’
The state of Alabama takes on a completely different approach and understands how individuals here lack basic literacy skills. Their mammogram reads something like this, ‘Your mammogram shows that your breast tissue is dense. Dense breast tissue is common and is not abnormal. However, dense breast tissue may make it harder to find cancer on a mammogram and may also be associated with an increased risk of breast cancer. This information about the result of your mammogram is given to you to raise your awareness. Use this information to talk to your doctor about your own risks for breast cancer. At that time, ask your doctor if more screening tests might be useful, based on your risk. A report of your results was sent to your physician.’
Known as the ‘density reporting movement’, the purpose of putting these legislative laws into practice was to emphasize the need and encourage shared conversations between the patient and healthcare provider so maximum benefit could be obtained. With cancer being one of the leading causes of death today, the report aimed to help those who might be at risk for developing this illness and catching it at an early stage. The time at which the patient finds out about their diagnosis is highly crucial, particularly in regard to this illness as it would indicate whether the cancer is at remiss, delayed or an advanced stage which simply put is a serious matter of life and death.
Authors of the JAMA study understand the importance of this and have come to the conclusion that ‘efforts should focus on enhancing the understandability of Dense Breast Notifications (DNBs) so that all women are clearly and accurately informed about their density status, its effect on their breast cancer risk, and the harms and benefits of supplemental screening.’