Abstract
BACKGROUND:
Breast density is an important breast cancer risk factor and a focus of recent national and state health policy efforts. We describe breast density awareness, knowledge, and communication among participants in a health-system-embedded trial among women at clinically elevated breast cancer risk one year prior to state-mandated density disclosure.
METHODS:
Patient demographics and prior health history were ascertained from electronic health records. Using baseline interview data collected from 2017 to 2018 among enrolled women (n=995), we calculated proportions of women reporting prior breast density awareness, knowledge of density’s masking effect, and communication with a provider about their own breast density. We used multiple logistic regression to estimate associations between women’s characteristics and density awareness, knowledge, and communication.
RESULTS:
While the overwhelming majority of participants had heard of breast density (91%) and were aware of breast density’s masking effect (87%), only 60% had ever discussed their breast density with a provider. Annual mammography screening was associated with prior breast density awareness (OR=2.97; 95% CI=1.29–6.81), knowledge (OR=2.83; 95% CI=1.20–6.66) and communication (OR=2.87; 95% CI=1.34–6.16), relative to infrequent or unknown screening intervals. Receipt of breast biopsy was also associated with prior knowledge (OR=1.60; 95% CI=1.04–2.45) and communication (OR=1.36; 95% CI=1.00–1.85).
CONCLUSIONS:
Breast density awareness and knowledge are high among insured women participating in clinical research, even in the absence of mandated density disclosure. Patient-provider communication about personal density status is less common, particularly among women with fewer interactions with breast health specialists.
Keywords: breast density, awareness, knowledge, communication
Precis:
Breast density awareness and knowledge are growing due to many factors, but patient-provider communication about breast density is inconsistent. Targeted efforts to close remaining awareness and knowledge gaps are needed, as is research on how to facilitate discussions about breast density between women and their providers.
INTRODUCTION
Having dense breast tissue is one of the strongest breast cancer risk factors after age and family history. Dense breast tissue, defined as Breast Imaging-Reporting Data System (BI-RADS®) categories heterogeneously or extremely dense, confers a 3- to 6-fold increase in breast cancer risk compared with less dense breast tissue and reduces mammography sensitivity.1–5 Women in the United States have increasing awareness of breast density, as thirty-six states have enacted density reporting laws.6 The Food and Drug Administration is currently considering similar federal regulations.7 Disclosure laws are contentious due to debate over whether density status is clinically actionable in isolation. Further, common density disclosure approaches (e.g., a form letter) appear to be inadequate for fully informing women about their own breast density.8–11
Ensuring patients are prepared to engage in shared decision-making about breast health management when alerted to their density status is essential given the lack of density-specific clinical guidelines. If patients do not understand breast density and how it impacts their cancer risk and screening options, density disclosure could lead to anxiety, confusion, inaction, or inappropriate use of healthcare services.12–14 Clarifying awareness, knowledge, and communication about breast density in community practice settings is therefore essential for informing work to maximize benefit and minimize harm from routine density disclosure.
Prior research presents conflicting messages about current breast density awareness, knowledge and communication in the US.15–17 While radiologists believe patient knowledge has increased due to density notification laws,18 empiric studies with patients paint a more complex picture. For example, qualitative work has revealed poor understanding and negative emotional responses to breast density notification, particularly among women who identify as Hispanic or receive care in safety net settings.17,19 Additional research is needed to clarify observed patterns, particularly given the rapidly changing policy landscape.
This study describes prior breast density awareness, knowledge, and communication in a health-system-embedded intervention trial. Density disclosure was not required by law at the time of the trial. State legislation, however, was pending and density status was included in mammography reports available in the health system’s patient portal. These conditions provide a unique opportunity to study a contemporary population with access to their density status in the absence of mandatory reporting.
METHODS
Study Population and Setting
Data were collected as part of Engaged, a behavioral intervention trial in a large health system in Washington state, described in detail elsewhere.20 Eligible women were aged 40–69 years with a normal mammogram in the past six months and at clinically elevated breast cancer risk based on a combination of their Breast Cancer Surveillance Consortium (BCSC) five-year invasive breast cancer risk21 and their BI-RADS® density score as determined by the reading radiologist during routine mammography. The BI-RADS® scale is a breast density measurement on a 4-point scale, ranging from fatty tissue to extremely dense tissue. We defined clinically elevated breast cancer risk based on BCSC 5-year risk calculator22 as either: (1) an intermediate 5-year invasive breast cancer risk (1.67–2.49%) and extremely dense breasts or (2) a high 5-year cancer risk (≥2.50%) and either heterogeneously dense or extremely dense breasts. We excluded women with a history of lobular carcinoma in situ (LCIS), any prior cancer diagnosis (including ductal carcinoma in situ and excluding non-melanoma skin cancer), and a previous referral for cancer genetic counseling and/or prior genetic testing.
Recruitment
Plain-language recruitment materials were drafted at a sixth-grade reading level.23 Women received a letter informing them they were eligible to participate in a research study, “…because your recent mammogram showed that you have dense breast tissue. Having dense breast tissue, along with other risk factors (such as age, family history or prior breast biopsy) means your risk of developing breast cancer is higher than average for a woman of your age and race.” A team member followed up by phone up to three times to assess eligibility and willingness to participate. Overall, 2,560 eligible women were invited to participate; 995 completed the baseline interview and provided informed consent (participation rate: 38.7%).
Data Collection
Study data come from the trial’s baseline phone interview (conducted between February 2017 and May 2018), health system administrative data, and patient risk factor forms at the time of most recent mammogram as part of the Breast Cancer Surveillance Consortium.24
Breast density awareness, knowledge, and communication
Baseline interview questions were modeled on prior work by Rhodes et al.25 Our primary outcomes were prior breast density awareness, current knowledge, and prior communication. To assess awareness, women were asked, “Before we invited you to join the study, had you ever heard of breast density?” with response options yes, no, or not sure. Women who reported they had not heard of breast density were not asked about breast density knowledge or provider communication. To assess knowledge, women were asked, “If a woman has dense breasts, what impact does this have on the ability of a mammogram to correctly detect cancer?” with response options dense breasts make it easier to see cancer on a mammogram, dense breasts do not impact the ability to see cancer on a mammogram, and dense breasts make it more difficult to see cancer on a mammogram. To assess communication, women were asked, “Have you ever discussed your own breast density with a health care provider?” with response options yes or no. Women who reported having discussed their own breast density with a provider were asked, “What led to your discussion about breast density?” with response options I asked my health care provider about my breast density, my health care provider brought up the topic of density with me, and something else.
Patient covariates
Administrative data and BCSC patient risk factor data were used to determine participants’ age, race/ethnicity, breast cancer family history, history of breast biopsy, and menopausal status. BCSC 5-year breast cancer risk was calculated by the study programmer. The remaining variables were assessed in the baseline interview. Women self-reported the highest grade or level of school they had completed, annual household income from all sources, overall health status, and mammogram frequency. We measured health literacy using a scale developed by Chew et al,26 summing the three items for a continuous health literacy score (possible range: 3–15).27 We assessed numeracy with the Subjective Numeracy Scale (possible range: 1–6).28,29 Women were asked to report what they think the chance is they will develop breast cancer in the next five years from 0% (no chance) to 100% (definitely will).30,31 We used a modified version of the 3-item scale developed by Lerman et al., to identify (yes/no) women reporting any worry about getting breast cancer during the past two weeks.32
Statistical Analysis
Patient characteristics were summarized using descriptive statistics by breast density awareness, knowledge, and communication. When necessary due to small numbers, response categories were collapsed across groups. Unadjusted associations between patient covariates and prior awareness, knowledge, and communication were calculated with Chi-squared and independent t-tests. Adjusted odds ratios (ORs) and 95% confidence intervals (CIs) were estimated using separate multiple logistic regression models including covariates associated with prior awareness, knowledge, and communication at the p ≤0.10 level in bivariate analyses. Regression models included complete cases and p ≤0.05 was used as the threshold for statistical significance. Analyses were conducted with STATA statistical software.
Ethical Considerations
All study activities were approved by the Georgetown University Institutional Review Board (IRB) as the IRB of record with a partial waiver of informed consent for recruitment activities. All participants completed an online or paper-based informed consent process.
RESULTS
Women’s mean age was 61.9 years (SD=5.1) (Table 1). Participants’ mean calculated BCSC 5-year breast cancer risk score was 2.92% (SD=0.7), while their mean perceived 5-year breast cancer risk at baseline was 30.1% (SD=22.4). About 45% reported a first-degree family history of breast cancer and a similar proportion had at least one previous breast biopsy. Most were college graduates (72.6%), identified as non-Hispanic white (94.8%), reported excellent or very good health (75.3%), and were postmenopausal (92.5%). Just over a quarter reported their household earned less than $60,000 annually, while 26.7% earned more than $100,000. Most women screened annually with mammography (65.3%).
Table 1.
Participant characteristics (n=995)
| Characteristic | N (%) | Mean (SD) |
|---|---|---|
| Age, years | 61.9 (5.1) | |
| BCSC 5-year breast cancer risk, % | 2.92 (0.7) | |
| Any first-degree family history of breast cancer | ||
| Yes | 447 (44.9) | |
| No | 480 (48.9) | |
| Missing | 68 (6.8) | |
| Any prior biopsy | ||
| Yes | 452 (45.4) | |
| No | 486 (48.8) | |
| Missing | 57 (5.7) | |
| Education | ||
| Less than a college degree | 256 (25.7) | |
| College graduate | 722 (72.6) | |
| Missing | 17 (1.7) | |
| Race/ethnicity | ||
| White, non-Hispanic | 943 (94.8) | |
| Other | 52 (5.2) | |
| Annual household income, $ | ||
| ≤60,000 | 258 (25.9) | |
| 60,001–80,000 | 213 (21.4) | |
| 80,001–100,000 | 185 (18.6) | |
| >100,000 | 266 (26.7) | |
| Missing | 73 (7.3) | |
| Self-reported health | ||
| Excellent or very good | 749 (75.3) | |
| Good | 211 (21.2) | |
| Fair or poor | 35 (3.5) | |
| Menopausal status | ||
| Premenopausal | 75 (7.5) | |
| Postmenopausal | 920 (92.5) | |
| Mammography frequency | ||
| Once per year | 650 (65.3) | |
| Once every 2 years | 300 (30.2) | |
| Infrequent or don’t know | 45 (4.5) | |
| Health literacy score | 14.4 (1.2) | |
| Numeracy score | 4.2 (0.7) | |
| Perceived 5-year breast cancer risk, % | 30.1 (22.4) | |
| Any breast cancer worry | ||
| Yes | 133 (13.4) | |
| No | 861 (86.6) |
Abbreviations: SD=standard deviation; BCSC=Breast Cancer Screening Consortium.
Overall, 90.7% of participants (n=995) had heard of breast density prior to study enrollment. Of women who had either heard of breast density prior to the study or were not sure (n=928), 87.0% responded correctly that dense breasts make detecting breast cancer during a mammogram more difficult. Of women who had either heard of breast density prior to the study or were not sure and answered the item about communication (n=921), 59.5% had also discussed their own breast density status with a healthcare provider. When asked who had initiated breast density conversations, women reported that 68% of conversations were provider-initiated. Univariate associations between patient covariates and prior breast density awareness, knowledge, and communication are reported in Table 2.
Table 2.
Unadjusted associations between participant characteristics and BD awareness, knowledge, and communication
| Awareness, n=995 | Knowledge, n=928 | Communication, n=921 | ||||
|---|---|---|---|---|---|---|
| Characteristic | % aware of BD prior to studya | Difference in means by awarenessb | % knew of BD’s effect on mammography performancea | Difference in means by knowledgeb | % discussed own BD with a providera | Difference in means by communicationb |
| Overall | 90.7 | 87.0 | 59.5 | |||
| Mean age, years | 0.9 | 0.5 | −0.4 | |||
| Mean 5-year BCSC breast cancer risk, % | 0.2* | 0.1 | 0.1 | |||
| Any first-degree family history of breast cancer | ||||||
| Yes | 91.5 | 85.2 | 54.8** | |||
| No | 90.8 | 88.4 | 64.5 | |||
| Any prior biopsy | ||||||
| Yes | 90.9 | 89.6* | 65.1*** | |||
| No | 90.7 | 84.6 | 54.4 | |||
| Education | ||||||
| Less than a college degree | 89.1 | 85.1 | 56.0 | |||
| College graduate | 91.4 | 87.6 | 60.3 | |||
| Race/ethnicity | ||||||
| White, non-Hispanic | 91.2* | 87.3 | 60.2+ | |||
| Other | 80.8 | 79.5 | 45.5 | |||
| Annual household income, $ | ||||||
| ≤60,000 | 87.2* | 86.3 | 53.0 | |||
| 60,001–80,000 | 88.7 | 87.2 | 60.8 | |||
| 80,001–100,000 | 91.9 | 88.4 | 63.2 | |||
| >100,000 | 94.0 | 98.7 | 59.8 | |||
| Self-reported health | ||||||
| Excellent or very good | 92.3** | 86.9 | 60.9 | |||
| Good | 87.2 | 86.2 | 55.9 | |||
| Fair or poor | 77.1 | 93.5 | 50.0 | |||
| Menopausal status | ||||||
| Premenopausal | 90.7 | 85.3 | 71.6* | |||
| Postmenopausal | 90.7 | 87.1 | 58.5 | |||
| Mammography frequency | ||||||
| Once per year | 92.1* | 89.5** | 61.0* | |||
| Once every 2 years | 98.3 | 82.7 | 59.2 | |||
| Infrequent or don’t know | 80.0 | 76.3 | 37.8 | |||
| Mean health literacy score | 0.3* | 0.1 | 0.1 | |||
| Mean numeracy score | 0.2* | 0.15* | 0.1 | |||
| Mean perceived 5-year breast cancer risk, % | 3.1 | 6.5* | −0.2 | |||
| Any breast cancer worry | ||||||
| Yes | 91.7 | 90.4 | 67.7* | |||
| No | 90.5 | 86.4 | 58.2 | |||
Abbreviations: BD=breast density; BCSC=Breast Cancer Screening Consortium.
Excludes missing data; p-value for chi-squared test of independence.
Between women reporting and not reporting prior awareness, knowledge, or communication; p-value for two sample t-test.
p <0.10;
p <0.05;
p <0.01;
p <0.001.
Household income (OR=2.14; 95% CI=1.10–4.15 high income vs. low income), self-reported health (OR=2.71; 95% CI=1.03–7.16 excellent/very good vs. poor/fair), and mammography frequency (OR=2.97; 95% CI=1.29–6.81 annual vs. infrequent) were independently associated with breast density awareness in adjusted analyses (Table 3). Previous biopsy (OR=1.60; 95% CI=1.04–2.45), mammography frequency (OR=2.83; 95% CI=1.20–6.66 annual vs. infrequent), higher numeracy score (OR=1.43; 95% CI=1.08–1.90 one-point increase), and higher perceived 5-year breast cancer risk (OR=1.01; 95% CI=1.00–1.02 one percentage-point increase) were independently associated with knowledge of breast density’s masking effect (Table 4). Finally, first-degree family history of breast cancer (OR=0.70; 95% CI=0.52–0.96), previous biopsy (OR=1.36; 95% CI=1.00–1.85), menopausal status (OR=1.90; 95% CI=1.04–3.47 premenopausal vs. post), and mammography frequency (OR=2.87; 95% CI=1.34–6.16 annual vs. infrequent) were independently associated with communication (Table 5).
Table 3.
Adjusted associations between participant characteristics and BD awareness (n=909)
| Characteristic | OR (95% CI) |
|---|---|
| BCSC 5-year breast cancer risk (one % point increase) | 1.28 (0.89–1.86) |
| Race/ethnicity | |
| White, non-Hispanic (v other) | 1.81 (0.81–4.06) |
| Annual household income, $ | |
| ≤60,000 | 1.00 Ref |
| 60,001–80,000 | 1.03 (0.58–1.84) |
| 80,001–100,000 | 1.84 (0.91–3.75) |
| >100,000 | 2.14 (1.10–4.15)* |
| Self-reported health | |
| Excellent or very good | 2.71 (1.03–7.16)* |
| Good | 1.68 (0.61–4.63) |
| Fair or poor | 1.00 Ref |
| Mammography frequency | |
| Once per year | 2.97 (1.29–6.81)* |
| Once every 2 years | 2.51 (1.06–5.93)* |
| Infrequent or don’t know | 1.00 Ref |
| Health literacy score (one-unit increase) | 1.00 (0.83–1.20) |
| Numeracy score (one-unit increase) | 1.22 (0.89–1.67) |
Note: model included all variables significant at p <0.10 in univariate analysis
Abbreviations: BD=breast density; OR=odds ratio; CI=confidence interval; Ref=reference; BCSC=Breast Cancer Screening Consortium.
p <0.05;
p <0.01;
p <0.001.
Table 4.
Adjusted associations between patient characteristics and BD knowledge (n=852)
| Characteristic | OR (95% CI) |
|---|---|
| Any prior biopsy | |
| Yes (v no) | 1.60 (1.04–2.45)* |
| Mammography frequency | |
| Once per year | 2.83 (1.20–6.66)* |
| Once every 2 years | 1.70 (0.71–4.08) |
| Infrequent or don’t know | 1.00 Ref |
| Numeracy score (one-unit increase) | 1.43 (1.08–1.90)* |
| Perceived 5-year breast cancer risk (one % point increase) | 1.01 (1.00–1.02)** |
Note: model included all variables significant at p <0.10 in univariate analysis
Abbreviations: BD=breast density; OR=odds ratio; CI=confidence interval; Ref=reference.
p <0.05;
p <0.01;
p <0.001.
Table 5.
Adjusted associations between patient characteristics and BD communication (n=820)
| Characteristic | OR (95% CI) |
|---|---|
| Any first-degree family history of breast cancer | |
| Yes (v no) | 0.70 (0.52–0.96)* |
| Any prior biopsy | |
| Yes (v no) | 1.36 (1.00–1.85)* |
| Race/ethnicity | |
| White, non-Hispanic (v other) | 1.53 (0.77–3.02) |
| Menopausal status | |
| Premenopausal (v postmenopausal) | 1.90 (1.04–3.47)* |
| Mammography frequency | |
| Once per year | 2.87 (1.34–6.16)** |
| Once every 2 years | 2.73 (1.25–5.96)* |
| Infrequent or don’t know | 1.00 Ref |
| Any breast cancer worry | |
| Yes (v no) | 1.46 (0.95–2.23) |
Note: model included all variables significant at p <0.10 in univariate analysis
Abbreviations: BD=breast density; OR=odds ratio; CI=confidence interval; Ref=reference.
p <0.05;
p <0.01;
p <0.001.
DISCUSSION
The majority of women participating in a health-system-embedded randomized controlled trial prior to mandatory density disclosure had heard of breast density and knew that it impacted mammography performance. However, a substantial proportion had never discussed their own breast density with a healthcare provider. Further, we observed variation in density awareness, knowledge, and communication by patient covariates, offering implications for improving the density disclosure process across patient subgroups.
Breast density awareness was substantially higher (91%) in this population with elevated breast cancer risk, relative to a nationally-representative sample of women surveyed in 2012 (51%)25 and patients screening at a tertiary care clinic in 2011–2013 (62%).33 Women were also more knowledgeable about breast density’s masking effect compared to prior national studies.16,25 Our sample included women who were at elevated breast cancer risk and had enrolled in a clinical study of breast density and risk communication. As a group, these women may be more inclined to seek out health information than women at average breast or women who do not participate in research. Our sample also had high health literacy and numeracy, high education levels, high household incomes and lacked racial and ethnic diversity, which have been associated with breast density knowledge and awareness.25 Finally, breast density information was available to women through the online patient portal prior to and throughout the trial and this might have increased knowledge and awareness. We did not specifically assess the source of breast density information among participants reporting prior awareness.
For breast density information to influence risk management and other clinical decisions around breast health, women must discuss their own breast density with a healthcare provider. Patient-provider communication about breast density in this population was lower relative to knowledge and awareness levels (60%), but higher than in previous studies of average-risk populations (44–53%).25,33 The majority of participants reported that their conversations about breast density were provider-initiated. Engagement with the healthcare system, particularly with breast health specialists for mammography or breast biopsy, was associated with higher awareness, knowledge and communication about breast density in our sample. This aligns with prior research16,25,33 indicating that providers play a key role in initiating discussions about breast density and most women learn about breast density during interactions focused specifically on breast cancer prevention and control, particularly in settings without mandated density disclosure. While these clinical interactions represent a key opportunity to engage women in discussion of personal breast cancer risk, we need to understand how to train, incentivize, and remind providers to discuss breast density with their patients and to put the information provided due to density disclosure mandates in the context of women’s overall health. Further, studies show that women who are confused during density disclosure report that they intend to follow up with a provider.17 Research on how to support women in initiating conversations about breast health with providers, particularly those who are less engaged in their healthcare, is also needed. Prior studies document variation in breast density awareness and knowledge by women’s sociodemographic factors15,25
Five-year BCSC breast cancer risk was not independently associated with density awareness, knowledge, or communication likely because all women in the sample had clinically significant breast cancer risk. Objective risk may be a predictor of breast density awareness and/or knowledge across a wider representation of risk levels. Women in our sample with higher perceived risk were more likely to know about breast density’s masking effect. Thus, perceived breast cancer risk may be more important to breast density information-seeking than actual clinical risk in women at elevated risk. Alternatively, informing women about the implications of dense breasts may contribute to inflated perceived breast cancer risk. Ensuring patients have an accurate understanding of their personal cancer risk and screening options is therefore an essential part of the density disclosure process. Breast cancer worry was not independently associated with patient-provider communication about breast density after adjustment for other covariates, though only 13% of participants reported any breast cancer worry. Women with poorer self-reported health were less aware of breast density, potentially because they and their providers were focused on more immediate health problems. Finally, contrary to what we expected from prior studies,33 women with a first-degree family history of breast cancer were less likely to have communicated with their provider about breast density. The mechanism behind this association remains unclear, but may also be related to the fact that our population was all at elevated risk. Conceivably, prior conversations about women’s breast cancer risk had focused on family history instead of breast density, given that it is a more clinically salient risk factor.
We studied a large sample of women enrolled in a clinical trial in a state that had yet to implement breast density legislation, with high capture of patient characteristics and self-reported outcomes. However, our analysis had several limitations. Our sample may have limited generalizability as, by design, trial participants were all at clinically elevated breast cancer risk. The trial also had a relatively low response rate and study participants were more likely to be white with high education and household income than non-participants.34 We asked about knowledge of density’s masking effect, only, and did not measure knowledge of density’s independent impact on cancer risk. The study recruitment letter also informed women of the association between breast density and breast cancer risk, which may have prompted some participants to seek out additional information regarding breast density, however, typically less than a month elapsed between mailing recruitment letters and conducting the baseline interview. Finally, our cross-sectional analyses precludes us from determining whether psychosocial factors like perceived risk and breast cancer worry are causes or consequences of density awareness, knowledge, and communication.
Awareness and knowledge about breast density are increasing, in part due to rapid adoption of density disclosure legislation. As density disclosure becomes standard practice, efforts to prepare women to learn their density status should prioritize those who screen infrequently, especially those in poor health, and patient subgroups that typically experience healthcare disparities. Finally, additional research is needed to understand and support patient-provider communication about breast density, particularly within primary care.
Acknowledgments
Funding: This study is supported by the National Cancer Institute under R01CA190221, R50CA211115 and P30CA051008 and the Agency for Healthcare Research and Quality under K12HS022982. Collection of breast cancer risk information is supported by the National Cancer Institute–funded BCSC (P01CA154292, HHSN261201100031C, and U54CA163303). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Footnotes
Conflicts: The authors made no disclosures.
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