Women's Understandings and Misunderstandings of Breast Density and Related Concepts: A Mixed Methods Study

Abstract

Background:

Most U.S. states require written notification of breast density after mammograms, yet effects of notifications on knowledge are mixed. Little is known about potential misunderstandings.

Methods:

We used a sequential mixed-methods study design to assess women's knowledge about breast density, after receiving a notification. We conducted a telephone survey among a racially/ethnically and health-literacy level diverse sample (N = 754) and qualitative interviews with 61 survey respondents.

Results:

In survey results, 58% of women correctly indicated that breast density is not related to touch, with higher accuracy among non-Hispanic White women and those with greater health literacy. Next, 87% of women recognized that breast density is identified visually via mammogram, with no significant differences in responses by race/ethnicity or health literacy. Most (81%) women recognized that a relationship exists between breast tissue types and density; Non-Hispanic White women were less likely to respond correctly. Only 47% of women correctly indicated that having dense breasts increases one's risk of breast cancer; women with low health literacy were more often correct. Qualitative results revealed additional dimensions of understanding: Some women incorrectly reported that density could be felt, or dense breasts were lumpier, thicker, or more compacted; others identified “dense” tissue as fatty. Interpretations of risk included that breast density was an early form of breast cancer.

Conclusion:

We found areas of consistent knowledge and identified misperceptions surrounding breast density across race/ethnicity and health literacy levels. Further education to address disparities and correct misunderstandings is essential to promote better knowledge, to foster informed decisions.

Introduction

Having dense breasts (more fibroglandular tissue than fatty tissue, as visualized on a mammogram) reduces the sensitivity of mammography by masking breast cancers and carries a 1.6- to 2.0-fold increased independent risk for breast cancer, relative to women with less dense breasts.^1,2 To inform women about these risks, 38 U.S. states and the federal government have enacted legislation requiring a written dense breast notification (DBN) of a patient's breast density after a mammogram.³

Recent research suggests disparate effects of the notifications on knowledge about breast density and its associated risks based on women's race/ethnicity and health literacy.⁴ Most prior research has utilized structured self-report questionnaires, so it is unclear what misunderstandings remain after women receive notifications. The ultimate goal of DBNs is to educate women about breast density, to guide their future decisions about breast cancer screening. Thus, in-depth characterization of women's knowledge after receiving a DBN can help ensure that future health communications are accessible and understandable to all recipients, as the Food and Drug Administration (FDA) is currently preparing language for a federal DBN.⁵

Using data from a national telephone survey and qualitative interviews among women who received DBNs, we examined differences in breast density knowledge by race/ethnicity and health literacy and qualitatively explored perceptions around the meaning of breast density.

Methods

We used a sequential mixed-methods study design, assessing knowledge on specific points regarding breast density with a telephone survey, followed by qualitative interviews with a subset of survey respondents to gain an in-depth perspective on women's understanding of breast density. We developed both the survey and qualitative interview guides based on the Health Belief Model, a framework to explain health-related behaviors and describe possible factors influencing individuals' health-related decisions,^6,7 along with existing literature and prior studies.^8
–10 The survey research was approved by the university Institutional Review Board; the qualitative interviews were determined to meet criteria for exemption.

Telephone survey

Participant sampling and recruitment

First, we conducted a cross-sectional, national, random digit dial telephone survey to assess women's knowledge. The sampling approach has been described in detail elsewhere.¹¹

Briefly, we obtained a diverse sample using three different approaches to obtaining telephone numbers. Professional interviewers from the survey firm SSRS conducted all structured telephone surveys. The primary sampling strategy was the inclusion of questions within SSRs' Omnibus survey (July 2019 through April 2020), a national, weekly, dual-frame bilingual random digit dial telephone survey using landlines and cell phones, conducted in English and Spanish, targeting a representative sample of the U.S. population of adults aged ≥18. Within this sample, we prioritized recruitment of women of color, those with less education, and from states without DBN laws; as such, only a random subset (22%, N = 2718) of White women with a high school diploma or more in DBN states were selected to participate.

Another sample of eligible participants were invited to participate using a prescreened callback sample from prior Omnibus waves to increase participation of Hispanic, Black, and Asian women, women with less than a high school education, and those living in the less populous non-DBN states. A third group of eligible participants were invited to participate using a sample specifically modeled by SSRS to reach Asian-American women. Figure 1 delineates the yield and cooperation rates from each sampling approach (range: 82%–95%). We screened potential survey participants to identify women 40 to 76 years old meeting the following eligibility criteria: (1) had a mammogram within the prior 2 years; (2) no personal history of breast cancer; and (3) had heard the term “dense breasts” or “breast density.”

FIG. 1.

Screening and recruitment.

Quantitative sample

Overall, 5559 women were deemed eligible to participate in the survey, 2718 of these women were invited to participate, and 412 participants declined to participate or withdrew before completing the full survey, leaving a sample of 2306 (85% overall cooperation rate). To assess understanding and knowledge among women who had received information about their personal breast density, and to align the quantitative sample with those eligible for inclusion in the qualitative sample, this analysis focused only on the subset of women from the full sample who had received a DBN; we excluded 1552 survey respondents who indicated that they had not received one. This left a final analytic sample of N = 754 women (Fig. 1 and Table 1).

Table 1.

Characteristics of the Survey Sample, N = 754

	Survey sample, N (%)
Overall	754
Age
40–49	163 (22%)
50–64	386 (51%)
65+	205 (27%)
Income
<$50K	276 (37%)
$50–$99.9K	255 (34%)
$100K+	183 (24%)
Missing	40 (5%)
Education
High school or less	124 (16%)
Some college	210 (28%)
College or more	417 (55%)
Missing	3 (<1%)
Race/ethnicity
Non-Hispanic White	318 (42%)
Non-Hispanic Black	190 (25%)
Hispanic	122 (16%)
Asian/Other	124 (16%)
Health literacy
Low	104 (14%)
High	650 (86%)

Quantitative measures

Dependent variables

We utilized questions from prior published surveys to assess women's knowledge about breast density (Table 2).^10,12 We asked respondents to indicate (1) whether breast density means: (a) how breasts feel when one touches them (a “no” response is correct), (b) what breasts look like on a mammogram (“yes” is correct), (c) the amount of fatty versus connective tissue in the breast (“yes” is correct), and (2) whether breast density increases the risk of breast cancer (“yes” is correct). Responses to each item were coded as binary variables indicating correct responses (1) versus incorrect or “don't know” responses (0). Participants who refused to answer a given question were omitted from analyses (<1%). These questions constituted only a subset of the survey.

Table 2.

Bivariate Analyses of Breast Density Knowledge Among Women Who Received a Breast Density Notification, by Sociodemographic Factors

Variable	Overall	Race/ethnicity				Health literacy
Variable	Overall	NH White	NH Black	Hispanic	Asian/Other	High	Low
N	754	318	190	122	124	650	104
Does breast density mean…
How breasts feel when you touch them? (% correct)	58%	63%^a	53%^b	49%^b	58%^a,b	60%^a	41%^b
How breasts feel when you touch them? (% correct)	58%	χ² (3) = 9.60, p = 0.022 ^*				χ² (3) = 13.70, p < 0.001 ^*
What breasts look like on mammogram? (% correct)	87%	88%	87%	88%	84%	88%	85%
What breasts look like on mammogram? (% correct)	87%	χ² (3) = 1.66, p = 0.647				χ² (3) = 0.76, p = 0.382
The amount of fatty versus connective tissue in the breast? (% correct)	81%	77%^a	87%^b	82%^a,b	77%^a	80%	87%
	81%	χ² (3) = 9.15, p = 0.027 ^*				χ² (3) = 2.82, p = 0.093
When a woman has dense breasts, does it…
Increase her risk of breast cancer? (% correct)	47%	48%	48%	49%	39%	43%^a	71%^b
Increase her risk of breast cancer? (% correct)	47%	χ² (3) = 3.96, p = 0.266				χ ² (3) = 28.70, p < 0.001 ^*

All questions analyzed as percent correct versus percent incorrect or “don't know.” Participants who refused to answer a given question were omitted from analyses (<1%). Significant differences by race/ethnicity or health literacy are bolded and indicated with an asterisk (^*). Within a given row, cells that contain different superscripted letters differ significantly from one another after Bonferroni correction for multiple comparisons; cells that contain the same superscripted letter do not differ significantly.

NH, non-Hispanic.

Sociodemographic characteristics

We assessed respondents' race and ethnicity (non-Hispanic White, non-Hispanic Black, Hispanic or Latino, Asian, other) and health literacy, defining low health literacy as either having less than a high school education or reporting sometimes/often/always needing assistance to complete medical forms using the validated Single Item Literacy Screener.¹³ We focused on these two sociodemographic characteristics in these quantitative analyses because they were used to guide participant selection for the qualitative sample.

Statistical analysis

We compared the proportion of correct responses to each survey item separately by race/ethnicity and health literacy using bivariate chi-square analyses. Post hoc comparisons across pairs of levels for each categorical variable were conducted as Z-tests with Bonferroni corrected p-values. Next, we conducted separate multivariable, binary logistic regressions predicting each dependent variable from both race/ethnicity and health literacy simultaneously; supplemental sensitivity analyses examined whether these results were robust to the additional inclusion of age and income as covariates.

Qualitative interviews Participant sampling and recruitment

We sought to enroll a subset of 64 survey study participants who were asked about interest in a follow-up telephone qualitative interview and consented to recontact. Of the 754 survey participants indicating that they had been informed of their personal breast density, 348 agreed to participate in a follow-up interview. We used a purposive sampling technique, enrolling participants into one of eight groups based on race and ethnicity (White, Black, Hispanic, and Other, which included women identifying as Asian, mixed race, or another race or ethnicity) and health literacy (high, low), aiming to enroll eight individuals per group. Using semistructured qualitative interviews, we sought to understand the reasons for and meaning ascribed to participants' survey responses regarding knowledge about breast density.

Interview guide development

We developed an open-ended, semistructured interview guide to expand upon domains covered in the survey questionnaires. Interviews examined numerous topics, including women's understandings and explanations of breast density and breast cancer risk. The interview guide was pilot tested with a patient advisory group before implementation (n = 5); the full guide includes topics not covered in this article (Supplementary Appendix).

Data collection

From February to May 2020, trained qualitative interviewers conducted 30–45 minute telephone interviews; participants received $25 debit cards. All interviews were audio recorded and professionally transcribed.

Qualitative analysis

We reviewed audio files against transcripts to ensure accuracy and remove any identifiable data unintentionally disclosed by participants. Deidentified transcripts were imported into NVivo qualitative coding software 12.1 for analysis.

Content analysis methods guided coding and theme development.¹⁴ We drafted an initial codebook based on domains from the interview guide, the conceptual model, and salient literature. Multiple research team members independently coded five interviews representing different health literacy and racial/ethnic categories to test the codebook. Initial coding facilitated codebook refinement, including inductive code development. The remaining transcripts were coded by one of two coders, with coding questions reconciled via consensus. Codes were analyzed overall and across health literacy and racial/ethnic identity categories using queries. Analytic memos were used to identify themes specifically relating to breast density knowledge.

Results

Characteristics of the samples

Quantitative sample

About half (51%) of the women in the survey sample were age 50–64, with 22% aged 40–49 and 27% aged 65 and older. Thirty-seven percent had incomes less than $50,000, 34% between $50k and $99.9k, and 24% having incomes $100k or greater. Sixteen percent had a high school education or less, 29% had some college, and 55% had a college education or greater. Fourteen percent had low health literacy. Forty-two percent were Non-Hispanic White, 25% were Non-Hispanic Black, 16% were Hispanic, and 16% of other race/ethnicity.

Qualitative sample

Sixty-one women were recruited, with at least six participants in each group defined by both literacy (high/low) and race/ethnicity (Black, Hispanic, Other, White). To preserve anonymity, the qualitative interview respondents were not linked to survey data, so we have no additional demographic information. Quotes are identified by literacy group (high [HL] vs. low [LL]) and race/ethnicity.

Below, we present results of each of the four quantitative survey items, followed by qualitative descriptions on each concept, generated from interviews.

Does breast density mean how breasts feel when one touches them?

In survey results, 58% of women overall correctly indicated that this statement is false (Table 2). Correct responses in bivariate analyses for this item were more common among non-Hispanic White women (compared to non-Hispanic Black or Hispanic women) and among those with higher health literacy. These differences persisted in multivariable regression models where both race/ethnicity and health literacy were entered simultaneously (Table 3), although the difference between Hispanic and non-Hispanic White women was no longer significant after additionally controlling for age and income in sensitivity analyses (Supplementary Table S1).

Table 3.

Multivariable Analyses

	Baseline odds	Race/ethnicity				Health literacy
	Baseline odds	NH White	NH Black	Hispanic	Asian/Other	High	Low
Does breast density mean…
How breasts feel when you touch them?	1.95	Ref.	0.63 ^* [0.44–0.91]	0.57 ^* [0.37–0.88]	0.77 [0.50–1.19]	Ref.	0.45 ^* [0.30–0.70]
How breasts feel when you touch them?	−2LL = 1001.02; χ² (4) = 23.02, p < 0.001 ^*
What breasts look like on mammogram?	7.94	Ref.	0.90 [0.52–1.56]	0.96 [0.51–1.82]	0.68 [0.38–1.22]	Ref.	0.75 [0.42–1.36]
What breasts look like on mammogram?	−2LL = 572.51; χ² (4) = 2.43, p = 0.657
The amount of fatty versus connective tissue in the breast?	3.18	Ref.	2.08 ^* [1.26–3.44]	1.30 [0.76–2.21]	0.98 [0.60–1.61]	Ref.	1.71 [0.94–3.11]
The amount of fatty versus connective tissue in the breast?	−2LL = 730.50; χ² (4) = 13.02, p = 0.011 ^*
When a woman has dense breasts, does it…
Increase her risk of breast cancer?	0.79	Ref.	1.07 [0.74–1.54]	0.97 [0.63–1.48]	0.70 [0.46–1.08]	Ref.	3.27 ^* [2.08–5.16]
Increase her risk of breast cancer?	−2LL = 1009.58; χ² (4) = 32.63, p < 0.001 ^*

All questions analyzed as correct versus incorrect or “don't know.” Participants who refused to answer a given question were omitted from analyses (<1%). Each row represents a single binary logistic regression model with race/ethnicity and health literacy variables entered simultaneously as predictors. Baseline odds represent the odds of getting the item correct for the reference group in the model (the exponent of the intercept for the model). All other cells report odds ratios with 95% confidence intervals in square brackets. Significant effects are bolded and indicated with an asterisk (^*).

−2LL, −2 Log Likelihood; NH, non-Hispanic.

Qualitative interview results provided further context to how women understand breast density, although no consistent pattern by race/ethnicity or health literacy was identified. Women described various conceptualizations of breast density, including density being a representation of “breast structure.” Some suggested that breast density meant that their breast tissue was lumpier, thicker, or more compacted, linking the detection of breast density to touch:

“if you've got dense breasts, you've got hard, thick places in your breasts and [women] should examine their own breasts and find out what should be there and what shouldn't” (White woman, LL)

“I guess it would be a little bit more firmer than other women's” (White woman, HL)

“I think what it means is the inside of my breast is compacted for some reason. This is what I assume it is, and that's why it's hard for them to see it, to see through.” (Hispanic woman, HL)

Some women correctly understood that breast density cannot be felt, yet perceived that it would impede a woman's ability to feel a breast lump.

“…with breast density, I don't think you can feel anything. You might probably feel sick, but I don't think you can definitely feel that lump. It's hiding behind all those tissues.” (Black woman, LL)

Others understood density to refer to cells or membranes in the breast:

“Of course your breasts is a soft membrane. …I think the older we get, the more the body changes. So as a young person, the better you take care of yourself, watch what you intake. I think your breast density will improve. Or the more you're out doing extracurricular activities like smoking, drinking, and what have you, they can always affect your density of your breasts also. Because the cells uptake fluids in different ways…. Your cells is not taking in as much fluid, or if you're one of those that drinks a lot of fluids yourself could be softer. But as the fluids go out of the cells of the membrane, I think it causes your cells to tighten more. Which causes the density to increase.” (Black woman, LL)

“But, basically my understanding is that I have a lot more, I want to say cells, that's probably not the right word. But there are a lot more smaller tissues that are in the breast, that there's just a lot more, I don't want to say definition, but I guess definition. I mean, it's kind of like the difference between a memory foam pillow and just a little feather. You feel there's more there. More dimension and more things to watch out for. But all of my doctors and medical people have always said that there's nothing wrong with it.” (Woman of ‘other’ race/ethnicity, LL)

Yet another understanding of breast density that women voiced was related to the “look” or size of breasts in relation to their density, with a range of perceptions on how density related to size and shape:

“Well, from an aesthetic point of view, fatty breasts aren't good because they really don't have a shape. To know how they were before you ever had children, okay? But from a health standpoint, with regard to as a diagnostic thing, it's fine to have them. So, if I were super dense, would they be perkier? They probably would, but then I could have a potential health problem and never know it because it wouldn't show up” (Woman of ‘other’ race/ethnicity, HL)

“Well, it means they don't sag like some women's do” (Woman of ‘other’ race/ethnicity, HL)

“I got a little boobs, so I think that's the density, very little.” (Woman of ‘other’ race/ethnicity, LL)

These quotes, from women of all sampled race/ethnicities and literacy levels, illustrate that women's knowledge of breast density can be inconsistent with the clinical definition of breast density in several ways and highlight knowledge gaps regarding breast anatomy.

Does breast density mean what breasts look like on a mammogram?

Next, 87% of women overall correctly answered “yes” to this question, with no significant differences by race/ethnicity or health literacy in bivariate or multivariable analyses. Along with this overall high rate of recognition of mammography's role in identifying dense breasts, some women referenced specific types of mammograms used to identify breast density:

“[Dense breasts mean…] That you have a lot of tissue umm… that can't be seen through regular testing.” (Black woman, HL)

“… if you got more tissue it could be hiding if you had a lump or whatever. It could be hiding behind tissue. It may not show up on just a regular mammogram. They have to do a 3D or a 4D or whatever to do … further testing.” (Black woman, HL)

“She explained to me what it was that it was harder to do it [the mammogram] because of the breast was bigger. I think that's how she put it and they could get a better picture if they did the density test instead of the regular.” (Hispanic woman, LL)

“They can't see the picture because of the type of breast that I have and they have to use another equipment.” (Hispanic woman, HL)

“I've talked to other women about it and everyone I know gets dense breast mammograms, and so I'm assuming that if the machinery is available, that is the path of choice in terms of what to get.” (White woman, LL)

These quotes support the survey findings that most women, regardless of race/ethnicity or health literacy, understand that breast density is determined via mammography and affects mammographic sensitivity. Some also believe that they need additional or different testing beyond mammography because of their density.

Does breast density mean the amount of fatty versus connective tissue in the breast?

Overall, 81% of women correctly recognized that there is a relationship between breast tissue types and density. In bivariate and multivariable results, Non-Hispanic White women were less likely to respond correctly than Non-Hispanic Black women, with no significant differences by health literacy. Qualitative interview results illuminated variation in women's understanding about the directionality of these relationships, including a common misunderstanding that “dense” tissue is fatty.

“What does it mean to me to have dense breast? That you have fatty tissue in your breast.” (Hispanic woman, HL)

“I'm on the heavier side as a female, so I just thought it related to additional fat in the breasts.” (Black woman, HL)

“That there is more fat in that area. That's what I'm assuming” (Woman of ‘other’ race/ethnicity, LL)

“I thought that dense breasts just meant that you maybe had a lot of fat in your breasts” (NH White woman, HL)

These quotes demonstrate that women across literacy status and racial/ethnic backgrounds had misunderstandings about the relationship of fatty tissue to breast density.

Do dense breasts increase one's risk of breast cancer?

Overall, 47% of women correctly responded “yes” to this question. In both bivariate and multivariable results, women with low health literacy were significantly more likely to be correct. The qualitative results provide additional information about women's understanding of risk. Some women correctly understood the association between density and breast cancer; these examples are all from women with high literacy.

“If you have dense breasts, you're more prone to cancer.” (NH White woman, HL)

“When you have, hmm, dense breast you have a higher risk of breast cancer.” (Hispanic woman, HL)

“My understanding is that breast tissue that is dense can be a higher indicator, or have a higher causative factor, toward breast cancer.” (Hispanic woman, HL)

Other women perceived that breast density is an early stage of breast cancer.

“And if you have dense breasts, then the warning signs are your first signs. You may not be able to feel a lump because it's a dense breast. So your warning signs will be a first sign that something is wrong and you need medical attention” (Woman of ‘other’ race/ethnicity, HL)

“This is very little, but it is a start from dense tissue, that I'm thinking…I think this is the primary stage of breast cancer, that's [what] I think.” (Woman of ‘other’ race/ethnicity, LL)

“I guess the higher the density is, the higher the chance you have breast cancer, so that's how I interpret it… I guess the thicker means the density is thicker… so it's a wider … not surface, area that can be more dangerous or can have more higher possibility to get cancer, I guess…. It's an indication of having breast cancer.” (Woman of ‘other’ race/ethnicity, LL)

“…that if you have the dense breasts that there could be a more prominent cancer, an active cancer there.” (Black woman, HL)

These results suggest that women from multiple race/ethnic and literacy groups have varying understandings of the concept of cancer risk associated with breast density, which are not completely explained by quantitative results.

Discussion

Using a sequential mixed-methods design, we aimed to understand how women who had received DBNs understood breast density, examining variations by women's race/ethnicity and health literacy. Qualitative interviews identified substantial variability in understandings of the concept and implications of dense breast tissue. Survey results indicated that a significant majority of women who had received DBNs correctly understood that breast density has to do with what breasts look like on a mammogram, but fewer understood its relationship to cancer risk.

Although most women responded correctly that breast density is related to the amount of fatty versus connective tissue, we observed significant variations by women's race/ethnicity, whereby Non-Hispanic White women were less likely to respond correctly than Non-Hispanic Black women. These results differ from prior findings that knowledge about breast density is greater among White women.¹⁵

Despite the majority of correct responses to this question, qualitative results indicated substantial variation in women's understanding of this concept, suggesting that the neutral wording of the survey question did not facilitate full understanding of what relationship women perceived between these types of tissue. We asked: “Does breast density mean the amount of fatty versus connective tissue in the breast?” (correct response: “yes”), based on the underlying concept that dense tissue is the connective/fibrous tissue within the breast. However, the interview data illustrated that some women understood the opposite to be true—that dense tissue is fatty tissue. Thus, surveys seeking to characterize knowledge should explicitly include the directionality of the relationship between key constructs to allow for a better analysis of women's understandings.

Our results also indicated that a substantial minority of women of all racial/ethnic backgrounds (but more so for Non-Hispanic Black women) and those with low literacy still misunderstand that breast density is unrelated to how breasts feel or that smaller breasts are less likely to be dense. This suggests that further educational efforts are needed to clarify that breast density is not perceptible to an individual woman or clinician and that it can only be identified on mammography. Such findings are reminiscent of the “embodied knowledge” found in other research on breast screening, where women indicated that they felt they know their bodies best, and could determine whether their breasts are dense.¹⁶

Nearly half of the women in the survey did not appreciate the link between breast density and breast cancer, although women with low health literacy were more likely to respond correctly. Perhaps women with less literacy and less knowledge become more fearful of the effects of breast density, conflating it with cancer, as found in prior studies,^9,17 but our study did not address that issue. Qualitative results illuminated the fact that while women may grasp that the two concepts are related, they may misunderstand the type of association. That is, while breast density is “associated” with breast cancer in the epidemiological sense, it is not an early stage of breast cancer. Future breast density education should clarify these distinctions.

Women's responses to the qualitative interviews demonstrated a dynamic we had not directly sought to identify: how one's understanding of breast density affects related behaviors designed to prevent or alleviate breast density and its associated risks. For example, given a [mis]understanding that density relates to the amount of fatty tissue in the breast, some women indicated that they should lose weight to minimize their breast density and future breast cancer risk. Others, perceiving that a woman can assess her own density, indicated that they would use breast self-examinations to do so. Others felt that smoking and drinking would lead to denser breasts and suggested that refraining from those behaviors would reduce density.

As prior surveys about breast density have primarily focused on the discrete outcomes of women's knowledge, attitudes, and breast screening, but not other behaviors, future studies should examine how women's perceptions about breast density affect a wide range of cancer prevention behaviors.

Our study had several limitations. To ensure that women had received information about personal breast density, we included only women who self-reported receipt of a DBN, but we do not have any information on the form, type, or content of the notification they received; nor did we have a comparison group. Our data collection methods relied on respondents' self-report; although these methods are widely used and the only way to learn women's understandings and perceptions, they are subject to some biases.

Conclusions

Our findings support and help to address the conclusions of a recent review which asserted that there is still only limited evidence about what breast density means, and what the implications are, to women.¹⁸ Our qualitative results provide rich illustrations of the kinds of misunderstandings women hold. Our findings, together with prior reports,^12,15,19,20 also suggest that DBNs alone are not adequately educating women, warranting further refinement and testing. As the FDA has a goal of promoting health and safety communication to minority populations who often experience low health literacy and/or speak English as a second language,²¹ our findings can help FDA craft a national DBN that is understandable to all women.

Footnotes

Authors' Contributions

N.R.K.: conceived, designed, and obtained funding for study; analyzed and interpreted study data; drafted and gave final approval for article, agree to be accountable for all aspects of the work. J.B.W.: analyzed and interpreted study data; reviewed and gave final approval for article, agree to be accountable for all aspects of the work. T.A.B.: helped conceive, design, and obtain funding for study; reviewed and gave final approval for article, agree to be accountable for all aspects of the work.

A.D.M.: obtained, analyzed, and interpreted study data; reviewed and gave final approval for article, agree to be accountable for all aspects of the work. P.J.S.: helped conceive, design, and obtain funding for study; reviewed and gave final approval for article, agree to be accountable for all aspects of the work. M.P.: analyzed and interpreted study data; reviewed and gave final approval for article, agree to be accountable for all aspects of the work. C.M.G.: helped conceive, design, and obtain funding for study; analyzed and interpreted study data; reviewed and gave final approval for article, agree to be accountable for all aspects of the work.

Author Disclosure Statement

P.J.S., Co-author on an UpToDate article on Breast density and screening for breast cancer, for which she receives royalties. No competing financial interests exist for the other authors.

Funding Information

This work was supported by a grant from the American Cancer Society (133017-RSG-19-085-01-CPHPS); C.M.G. was also supported by the National Cancer Institute (1K07CA221899).

Supplementary Material

Supplementary Appendix

Supplementary Table S1

References

Kerlikowske

, Hubbard

, Miglioretti

, et al. Comparative effectiveness of digital versus film-screen mammography in community practice in the United States: A cohort study. Ann Internal Med, 2011; 155:493–502.

Nelson

, Zakher

, Cantor

, et al. Risk factors for breast cancer for women aged 40 to 49 years: A systematic review and meta-analysis. Ann Internal Med, 2012; 156:635–648.

DenseBreast-Info.org. DenseBreast-Info.org. 2021. Available at https://densebreast-info.org Accessed June 22, 2021 .

Pace

. Dense breast notification legislation: More reasons for caution. J Gen Internal Med, 2020; 35:1937–1939.

U.S. Food and Drug Administration. Mammography Quality Standards Act. 2019. Available at https://www.federalregister.gov/documents/2019/03/28/2019-05803/mammography-quality-standards-act Accessed July 27, 2020 .

Becker

. The health belief model and personal health behavior. Thorofare: CB Slack, 1974.

Rosenstock

. Why people use health services. Milbank Mem Fund Q, 1966; 44:94–127.

Gunn

, Battaglia

, Paasche-Orlow

, West

, Kressin

. Women's perceptions of dense breast notifications in a Massachusetts safety net hospital: “So what is that supposed to mean?”. Patient Educ Couns, 2018; 101:1123–1129.

Gunn

, Fitzpatrick

, Waugh

, et al. A qualitative study of Spanish-Speakers' experience with dense breast notifications in a Massachusetts safety-net hospital. J Gen Internal Med, 2019; 34:198–205.

10.

Kressin

, Wormwood

, Battaglia

, Gunn

. Differences in breast density awareness, knowledge, and plans based on state legislation status and sociodemographic characteristics. J Gen Internal Med, 2020; 35:1923–1925.

11.

Kressin

, Battaglia

, Wormwood

, Slanetz

, Gunn

. Dense Breast Notification Laws' Association with outcomes in the US population: A cross-sectional study. J Am Coll Radiol, 2021; 18:685–695.

12.

Rhodes

, Breitkopf

, Ziegenfuss

, Jenkins

, Vachon

. Awareness of breast density and its impact on breast cancer detection and risk. J Clin Oncol, 2015; 33:1143–1150.

13.

Morris

, MacLean

, Chew

, Littenberg

. The Single Item Literacy Screener: Evaluation of a brief instrument to identify limited reading ability. BMC family practice, 2006; 7:21.

14.

Burla

, Knierim

, Barth

, Liewald

, Duetz

, Abel

. From text to codings: Intercoder reliability assessment in qualitative content analysis. Nurs Res, 2008; 57:113–117.

15.

Rhodes

, Jenkins

, Hruska

, Vachon

, Breitkopf

. Breast density awareness, knowledge, and attitudes among US Women: National survey results across 5 years. J Am Coll Radiol, 2020; 17:391–404.

16.

Gunn

, Maschke

, Paasche-Orlow

, Kressin

, Schonberg

, Battaglia

. Engaging women with limited health literacy in mammography decision-making: Perspectives of patients and primary care providers. J Gen Internal Med, 2021; 36:938–945.

17.

Gunn

, Maschke

, Paasche-Orlow

, Housten

, Kressin

, Schonberg

, Battaglia

. Using mixed methods with multiple stakeholders to inform development of a breast cancer screening decision aid for women with limited health literacy. Medical Decision Making Policy Pract, 2021; 6(2):23814683211033249. DOI: 10.1177/23814683211033249.

18.

Nickel

, Copp

, Brennan

, Farber

, McCaffery

, Houssami

. The impact of breast density information or notification on women's cognitive, psychological, and behavioral outcomes: A systematic review. J Natl Cancer Instit, 2021; 113(10):1299–1328. DOI: 10.1093/jnci/djab016.

19.

Kyanko

, Hoag

, Busch

, et al. Dense breast notification laws, education, and women's awareness and knowledge of breast density: A nationally representative survey. J Gen Internal Med, 2020; 35:1940–1945.

20.

Rhodes

, Conners

. Breast density legislation. Implications for patients and primary care providers. Minnesota Med, 2014; 97:43–48.

21.

Equity FOoMHaH. FDA Office of Minority Health and Health Equity 2021. Available at https://www.fda.gov/about-fda/office-commissioner/office-minority-health-and-health-equity Accessed June 22, 2021 .

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.03 MB

0.02 MB