State laws that require notification of women who have dense breast tissue are encouraging more patient-provider conversations about breast cancer risk and improving women's confidence in their decisions about screening, a new study shows.
“These study results confirm that women who participate in mammography screening want important health information about breast density, and that the mammogram results letter leads to further conversations between them and their physicians about breast screening,” said lead author Nancy M. Cappello, PhD, founder of Are Your Dense and Are You Dense Advocacy. Cappello was diagnosed with advanced stage breast cancer after decades of normal mammography results. “These results further support our relentless mission to reduce missed, delayed, and advanced stage breast cancer by increasing access to early detection for women with dense breasts, leading to reduced harms from aggressive treatments and better survival outcomes.”
Survey Design & Findings
The study findings were reported in October in the Journal of the American College of Radiology (2018; doi:https://doi.org/10.1016/j.jacr.2018.08.009). This national survey sought to understand the impact of density reporting laws on breast density risk awareness and patient engagement in conversations with providers about that risk. It was spearheaded by Are You Dense, Inc., and Are Your Dense Advocacy, Inc., which work to ensure that women with dense breasts have early access to breast cancer diagnosis. These groups commissioned Spectrum Associates Market Research to design the survey, which was conducted electronically in February 2018.
The national survey sample included women between 40 and 74 years old (the age range for breast cancer screening) who had undergone mammography screening within 2 years of survey receipt. The number of respondents who met the inclusion criteria and completed the survey was 1,500. These respondents were divided into five sample groups of 300 each:
- women in Connecticut (CT group), the first state to mandate breast tissue density reporting;
- all respondents (everyone) in states with no density reporting laws (E/ND group);
- women from 16 states where only women with dense breasts receive notification (OD group);
- all respondents (everyone) from nine states where all women undergoing mammography screening receive density information and those with dense tissue receive additional language stating that density is associated with increased breast cancer risk (E/DB group); and
- respondents from 19 states with no density reporting laws as of February 2018 (No-law group).
The survey asked women about their knowledge of breast density, including their understanding of breast density types. The survey also asked their level of agreement with a statement that it is important for every woman to know her breast tissue type, whether their state required breast density reporting, whether they believed dense breast tissue can mask cancers on mammography, and whether they believed having dense breasts increases breast cancer risk. The final question asked the women about their sources of information on breast tissue density.
For women who answered that they had been informed of their breast density type, the survey asked how they were informed (letter, conversation), whether a provider spoke with them about supplemental screening options, and who initiated conversations about breast tissue density (e.g., the woman, her gynecologic provider, or a radiologist).
More than three-fourths of the respondents (76-81%) reported feeling at least fairly knowledgeable about breast density, and one-fifth (18-23%) reported feeling not very knowledgeable. The vast majority (85-90%) of respondents in all groups completely agreed or mostly agreed that it is important for every woman to know her breast density type, and the same range of respondents agreed with the statement, “I would prefer to know my breast tissue type than not know.” The majority of women (67-80%) in all sample groups also knew that dense breasts may mask cancers screened with mammography alone. However, less than half of respondents in four of the five sample groups knew that dense breast tissue increases a woman's risk for breast cancer.
Among the respondents from states with density reporting laws, most women were not aware that reporting was required. In Connecticut, the state that passed the first reporting law in 2009, respondents were twice as likely to be aware of existing density laws than other respondent groups. Across all five sample groups, respondents reported that their primary source of breast density information was a women's health care provider (56-71%).
Among respondents who said they knew their breast tissue type, 70-79 percent reported that they had dense breasts (across all five groups). Women who had conversations about this finding with a provider indicated that the provider initiated the discussion a majority of the time. Women in states with no law were more likely to report that they initiated conversations about breast tissue density. A wide variation was noted across the five sample groups with regard to the proportion of women who reported having dense breasts and had discussed supplemental screening with their providers.
Although most respondents said they were not aware of density reporting laws in their state, women in states with laws of longer duration were significantly more likely to be aware of them. These women were also significantly more likely to know their own breast tissue type (59% vs. 50%; p=.004). Also, in states with a longer duration of laws, women with dense breasts were significantly more likely to report that their provider talked with them about supplemental screening.
The authors of the study highlighted five key findings in their discussion.
- State density reporting legislation is significantly associated with higher rates of patient-provider conversation about breast tissue density, and women in states with reporting laws are significantly more likely to discuss supplemental screening options.
- Women feel strongly that they want to be informed of risks associated with dense breasts and to be informed of their own breast density category.
- Greater efforts may be needed to increase women's knowledge about specific breast tissue categories and associated higher risk. Women across the sample groups knew less about the increased inherent risk of developing breast cancer because of dense breasts, separate from the masking effect.
- Women continue to obtain the majority of their information about breast density and breast cancer risk during conversations with health care providers. The majority of these discussions are initiated by providers.
- Efforts to keep density reporting laws in effect, and to pass laws in all other states, are important. Women from states where laws have been in place longer are significantly more likely to know their own breast tissue category.
“This national survey study demonstrates that the vast majority of U.S. women want to know about their breast density type,” said study coauthor Christoph I. Lee, MD, MS, Professor of Radiology at the University of Washington School of Medicine and Adjunct Professor of Health Services at the University of Washington School of Public Health, Seattle. He is also a faculty investigator at the Hutchinson Institute for Cancer Outcomes Research.
“Moreover, there was a statistically significant association between state-level density reporting laws and women's awareness of risks associated with breast density. Women in states with density reporting laws were also more likely to engage in discussion with their physicians regarding supplemental breast cancer screening.
“These results are encouraging, indicating that the density reporting laws have contributed to women's awareness and increased their engagement in more personalized screening regimens,” Lee said. “While the results were somewhat expected, this survey is one of the first that demonstrates a significant association between reporting laws and their intended effects among a national sample of women.”
The Legal Landscape
As of October 2018, 36 states have passed laws requiring standardized reporting of breast tissue density when communicating the results of mammography screening (Table 1). The reporting laws in several states (including California, Florida, Kentucky, and Washington) are due to sunset within the next few years. The authors of this study urge the renewal of these laws, plus additional laws throughout the country.
“Mandatory reporting of breast density is no small feat,” Lee acknowledged. “Nearly half of the 40 million U.S. women undergoing mammography screening each year will have dense breasts. Informing these many women requires greater resources. ... But the increased awareness of risks associated with dense breasts and the greater likelihood of having discussions about these risks is important. Breast cancer screening is no longer a one-size-fits-all process, and it should be approached differently for women at higher risk.”
Lee pointed out that although breast density is considered a moderate risk factor for breast cancer, it is one of the more common risk factors and women should be informed about it. Because a finding of breast density often prompts supplemental studies that the medical and insurance communities have questioned in terms of cost, usefulness, and risk, Lee said that more research is needed in clinical settings to demonstrate the benefits and risks associated with supplemental screening ultrasound and/or MRI for women at increased risk.
Cappello emphasized the importance of clear communication about breast cancer risk. “The important takeaway from this paper is that density reporting laws are leading to discussions between patients and providers about more personal screening protocols based on the risk of having dense breast tissue and other risk factors,” she said. “Regardless of your state's reporting status, if your health care provider is not talking about your dense breasts, it is critically important to initiate the conversation about breast screening, which may include adjuncts to the mammogram.”
Michelle Perron is a contributing writer.
Online Tools for Breast Density
For more information on Are You Dense, visit www.areyoudense.org. To download the American College of Radiology patient brochure on breast density, visit www.mammographysaveslives.org.