Communication, education may help reduce confusion about dense breast notifications
Women who received a radiology dense breast notification often found it difficult to understand and interpreted it incorrectly, according to findings from a qualitative study.
Greater breast density — meaning more nonfatty tissue and less fatty tissue — increases breast cancer risk. Thirty-four states require patients who undergo screening mammogram to receive some level of breast density notification; however, some laws only require general notification about breast density rather than information about the individual’s breast density characteristics.
Christine M. Gunn, PhD, research assistant professor at Boston University School of Medicine, and colleagues sought to better understand how dense breast notifications impacted recipients and their participation in follow-up care.
Their study included 30 English-speaking women aged 40 to 74 years who received a dense breast notification from hospital in Massachusetts. A state law passed in 2014 requires providers of mammography services to notify individuals in writing if mammography results show the person has dense breast tissue.
Researchers conducted semistructured telephone interviews with participants and used content coding to characterize their recall of the notification content, perceptions of breast density, and planned or actual participation in follow-up care.
Results showed 81% of women recalled receiving a dense breast notification. However, most could not remember specific content, and many women stated they struggled to interpret what breast density meant. The majority of women planned to or did talk with their physicians about breast density as a result of receiving the notification.
“Educational support is needed to promote informed decision-making about breast cancer screening that incorporates personal risk in the setting of dense breast legislation,” Gunn and colleagues wrote.
HemOnc Today spoke with Gunn about the study; the role of breast density in breast cancer risk; the wide variation in breast density notifications between states; and what members of the clinical community can do to ensure women with dense breasts receive appropriate notification and understand what this information means.
Question: What prompted this research?
Answer: I became aware of the wide array of laws for breast density notifications between states a couple years ago. Colleagues of mine were asked to testify about breast density in Massachusetts. In reading the literature, it became clear these laws aim to inform women about their breast density and the associated risk, but they may also have unintended consequences for both patients and clinicians. I undertook this qualitative study to explore how the notifications may be affecting the women who received them, as this was one of the gaps in the literature.
Q: What did the findings show?
A: We found 81% of women we contacted remembered receiving the notification. We interviewed the women who remembered receiving the notification, and very few recalled some of the key messages contained in the notification. For example, only three women remembered that breast density increased their risk for cancer, which was one of the main messages in the notification. Eight women talked about masking biases associated with density, as it is harder to see tumors in women with dense breasts on a mammogram. Nine women remembered the message about there being possible benefits of supplemental screening. We additionally found that women truly struggle to understand the meaning of breast density, as well as what the notification was telling them and the possible implications on their health.
Q: Did any of the findings surprise you?
A: What surprised me was the low number of women with dense breasts who remembered their risk for breast cancer. At the same time, the women felt very alarmed by the letter. This was not necessarily surprising to me, but the fact that they did not absorb what the letter was trying to tell them was quite concerning.
Q: What are the clinical implications of the findings?
A: Many of the women in our study either intended to or had spoken with their doctors as a result of receiving the dense breast notification. Thus, clinicians — especially primary care providers who most often order mammograms for women — need to be prepared to counsel women about breast density. They should describe what it is and its implications for breast cancer risk, and then make recommendations for tailored screening if appropriate. The key is that breast density is one risk factor among many risk factors. The use of risk assessment calculators might be useful to help clinicians determine individual risk for developing breast cancer and make evidence-based recommendations about supplemental screening with ultrasound or MRI. Professional breast cancer guidelines do not recommend doing anything different based upon breast density alone, but it is important to consider breast density as one risk factor among many. There also is a need for health systems to support patients and providers in terms of providing education to help them understand breast density without causing alarm and confusion.
Q: Can you provide some context for the role of breast density in breast cancer risk?
A: A woman who has extremely dense breasts has anywhere from between a 1.2 to four times greater risk for breast cancer than someone who has the lowest density breasts. Relatively speaking, it is nearly on par with having a family member with breast cancer. However, the absolute increase in risk is much smaller when taken into consideration with other risks. For example, the absolute increase in risk for a woman with extremely dense breast tissue is only 0.6% compared with a woman who has no family history of breast cancer, no previous biopsies and average breast density.
Q: Can you address the wide variation in breast density notifications between states?
A: My colleagues and I conducted a study in 2016 looking across the 24 states that had implemented these laws at that time and we found a lot of similarities. All 24 states mentioned masking bias on mammography; the vast majority (86%) of states mentioned the increased risk for breast cancer; and two-thirds mentioned an option for supplemental screening in the notification. However, there also were a lot of variations. For example, most states mandated specific language that went into the letter, and only four states — including Massachusetts — did not. Also, one-third of the states provided a letter to everyone regardless of their breast density. Another way in which the states varied was in readability. We conducted an assessment in the readability of all of these different notifications and it ranged from a seventh-grade reading level to a college reading level. This points to the potential for misunderstanding what the notifications are saying, especially among populations with lower health literacy.
Q: What should members of the clinical community do to ensure that women with dense breasts receive appropriate notification and also understand this information?
A: A provider can prepare women when they are ordering the mammograms for the possible outcomes. This makes the notification about breast density less confusing and alarming because they are prepared for the fact that this is a possible outcome of screening. Second, clinicians can really emphasize the message that breast density is just one of the many risk factors that can contribute to breast cancer risk. Clinicians can use risk assessment tools to assess an individual’s overall risk and then make recommendations based upon that lifetime risk, not just dense breasts alone.
Q: Is there anything else that you would like to mention ?
A: It is important to think about how complicated notifying women about breast density can be, especially when considering non-English speaking populations and other populations that have other communication barriers. This is a direction that I have taken in my own research, looking at breast density notifications in Spanish-speaking populations. There needs to be systems that support providing information accurately and in the patient’s own language, possibly with supplemental education to help minimize misperceptions and prevent notification confusion. – by Jennifer Southall
Gunn CM, et al. Patient Educ Couns. 2018;doi:10.1016/j.pec.2018.01.017.
For more information:
Christine M. Gunn, PhD, can be reached at Boston University School of Medicine, 801 Massachusetts Ave., Crosstown Building, First Floor Women’s Health, Boston, MA 02118; email: firstname.lastname@example.org.
Disclosure: Gunn reports no relevant financial disclosures.