“You probably can’t feel as safe as normal women”: Hispanic women’s reactions to breast density notification

Abstract

Background:

Patient advocacy has led to state-level legislative mandates for the release of personal mammographic breast density information to women undergoing screening mammography. The impact of this information on women’s perceptions and mammography screening behavior remains unclear.

Methods:

We conducted semi-structured interviews in English and Spanish with 24 self-identified Hispanic women who had at least one mammogram since breast density notification was enacted in New York State (NYS; age range: 43–63 years). We asked women about their understanding and perceptions of the communication of NYS mandated breast density information, and any actions they have taken or would take in response to this information. We conducted a content analysis of the qualitative data from the translated and transcribed interviews.

Results:

Most participants had no prior knowledge of breast density and expressed confusion and apprehension about the meaning of dense breasts when presented with the notification information. Many participants understood having dense breasts as a serious and abnormal condition, and reported feelings of worry and vulnerability. Participants mostly expressed a strong interest in learning more about breast density and obtaining additional and more frequent breast cancer screening tests. These behavioral intentions were consistent with participants’ overall favorable view of breast cancer screening and a belief that their faith, as well as regular screening, can help to protect them from breast cancer morbidity and mortality.

Conclusions:

Hispanic women conveyed proactive breast cancer screening intentions in response to breast density notification, despite inadequate comprehension of this information and negative emotional responses.

Precis:

State-level legislation mandates written notification to women with dense breasts regarding lower mammographic detection and higher risk of breast cancer. This study examined Hispanic women’s understanding and reactions to breast density notification and their actual and intended healthcare behaviors.

INTRODUCTION

Breast density, referring to the amount of fibroglandular (dense) breast tissue visualized on a mammogram, plays a dual role in breast cancer prevention and early detection.¹ First, breast density is a risk factor for breast cancer, with a meta-analysis of over 40 studies showing over a four-fold increase in relative risk of breast cancer for women with very dense breasts (≥75% density) compared to women with mostly fatty breasts (5% density).² Second, breast density interferes with early detection of tumors that may be difficult to distinguish from dense breast tissue, which similar to breast tumors, appear white on amammogram.³

Breast density has been the focus of a growing research on the etiology of breast cancer.⁴ Breast density has also been evaluated and documented by clinical radiologists as a means of gauging the sensitivity of mammograms for detecting tumors.⁵ More recently, patient advocacy efforts have prompted a growing number of states to adopt legislative mandates for the release of personal mammographic breast density to women, commonly known as breast density notification (BDN). These state-level laws require mammography providers to deliver written information about the lower sensitivity of mammography in dense breasts to women with heterogeneously or extremely dense breasts, as defined by the American College of Radiology Breast Imaging-Reporting and Data System (BI-RADS). Most laws also require that women are informed about the increased breast cancer risk associated with higher breast density, and are advised to consult their physicians about their risk and options for breast cancer screening. All of these elements are included in the legislation enacted in New York State (NYS) in January 2013, where a mandated uniform text is included in the letter containing mammography clinical results that is mailed to women (Appendix A).

The impact of BDN on women’s awareness and knowledge of breast density and breast cancer screening remains to be elucidated. Several surveys have documented varying levels of awareness of breast density and its relationship with breast cancer detection and risk, with less knowledge among lower socioeconomic and racial/ethnic minority women.^6–9 In the largest study of women of screening age, over half had heard of breast density, but this awareness varied from 23% in Hispanic women to 65% in non-Hispanic white women.¹⁰ How women understand, perceive, and act on personal breast density information, as conveyed through BDN, remain largely unknown. While BDN may motivate women and their healthcare providers to engage in clinical risk assessment and discuss a personalized screening plan, these interactions and outcomes may be less likely to occur for women with fewer socioeconomic resources, less healthcare coverage or higher medical mistrust. Women of immigrant background and limited English proficiency may have greater difficulty understanding complex healthcare information and accessing supplemental screening methods. Focusing on immigrant Hispanic women, the purpose of this qualitative study was to gain greater insight into women’s understanding of and reactions to BDN information, and any proposed or taken actions in response. The results can aid in the development of clinical, systems, and behavioral interventions for women with dense breasts, and may help to improve the content and comprehension of notification information at the policy-level.

MATERIALS AND METHODS

Study Setting and Procedures

Participants were drawn from a sample of women who were enrolled into an ongoing observational study from a large screening mammography clinic in New York City. Of this study sample, 41 women met the eligibility criteria of self-identifying as Hispanic and having a history of dense breast since the enactment of NYS notification legislation, defined according to the BDN legislation (BI-RADS density categories C and D).^{11, 12} Participant characteristics and risk factors were assessed at the time of enrollment (2012–2014), which occurred on average 2.5 years prior to the qualitative interviews. All participants had received BDN as part of their clinical mammography report in English and Spanish, but none had received any information on breast health or breast density as part of their participation in the study.

We mailed eligible women an introductory letter and an accompanied response form to opt out of further contact, which no one chose to do. One member of the research team (ASP), fluent in English and Spanish, called participants to describe the study in detail, answer questions, and if interested, to obtain verbal consent, and conduct one-on-one interviews. Between May 2015 and July 2016, we interviewed 24 women in their preferred language by telephone (Interview language included 13 in English, 10 in Spanish and 1 in both languages). We used an iterative data collection and analysis process, and ceased further follow-up and data collection of the remaining eligible participants once we reached thematic saturation after 24 interviews (i.e, no new codes or themes were identified).

The interviews followed a guide containing a series of open-ended questions on four main areas: 1) attitudes and experiences towards past breast cancer screening, 2) overall awareness and recall of BDN, and any actions taken or would take to learn about breast density, 3) understanding and responses to the BDN text (the paragraph was read to women verbatim), and 4) suggestions for communicating breast density information to women from their community. Additional questions and probes asked participants to clarify and expand on their responses, and specifically probed for emotional and behavioral responses to BDN. Interviews lasted on average 16 minutes (range: 7–40 minutes).

Digital audio-recordings were transcribed verbatim in the original language of the interview, and Spanish transcripts were translated into English. Two bilingual members of the research team (ASP, CBR) reviewed all transcripts for accuracy, and listened to original recordings for clarification.

Columbia University Medical Center Institutional Review Board approved the protocol. Participants provided written informed consent at enrollment into the parent study and provided verbal consent prior to participating in the current study.

Data Analysis

We conducted inductive content analysis and used Dedoose software to facilitate the organization of the results by codes and themes (Dedoose 8.0.42).^{13, 14} Two researchers (ASP, PT) independently reviewed the unscripted transcripts of the first 22 interviews and believed that data saturation had been reached. We conducted interviews with two additional participants, which confirmed saturation; that is, no new concepts, ideas or themes emerged from the additional interviews. Independent line-by-line analysis of 24 interviews were conducted (ASP, PT), inductively generating an initial list of broad codes that grouped recurring and similar categories and themes. The coding schemes and themes were modified through an iterative process that included re-reading the transcripts and/or listening to recordings to reach clarity. We held group discussions to agree on overarching themes and resolve any discrepancies through in-depth discussion and consensus.

RESULTS

Participants were on average 52.0 (standard deviation [SD] = 5.6) years, and had a range of educational background with 38% having a high school degree or lower education. The majority of participants were born in the Dominican Republic (54%) and Puerto Rico (8%), and the majority did not have family history of breast cancer or history of prior biopsy. All participants had received at least one mammogram within three years and 75% had at least two mammograms within five years before the qualitative interviews. There were no major differences in demographic characteristics and breast cancer risk factors between women who were interviewed in the current study and those who were eligible for participation, but were not interviewed (Table 1).

Table 1.

Characteristics of eligible participants.

	Interviewed (n =24) n(%)/ Mean(SD)	Not Interviewed (n= 17) n(%)/ Mean(SD)
Age at enrollment	49.4 (5.5)	48.2 (4.3)
Foreign-born	15 (63)	12 (71)
Educational attainment
< High School	6 (25)	2 (12)
High School Graduate	3 (13)	4 (24)
Some College	8 (33)	5 (29)
Bachelor's Degree or More	7 (29)	6 (35)
Health Literacy*
Adequate	12 (50)	7 (41)
Marginal	5 (21)	5 (29)
Low	7 (29)	4 (24)
Missing	-	1 (6)
Marital Status
Married	4 (17)	6 (35)
Living with a partner, not married	4 (17)	3 (18)
Single, never married	5 (21)	3 (18)
Divorced or separated	10 (42)	5 (29)
Widow	-	-
Missing	1 (4)	-
Body Mass Index (Kg/m2)	28.4 (5.3)	29.3 (3.4)
Age at Menarche	12.8 (2.0)	12.7 (1.6)
Age at first birth	24.7 (6.2)	25.1 (6.7)
Parity	2.0 (1.3)	2.4 (1.4)
Menopausal status
Pre-menopausal	11 (46)	9 (53)
Peri-menopausal	6 (25)	2 (12)
Post-menopausal	7 (29)	4 (24)
History of Breast Cancer in First-degree relatives	3 (13)	1 (6)
Personal History of Breast Biopsy	8 (33)	8 (47)

^*assessed using three questions developed by Chew et al, 2004.²⁹

Key Themes for Responses to Breast Density Notification

We present 5 overarching themes that were inductively identified, and relate to participants’ cognitive, emotional, coping, and behavioral responses to the BDN. These themes, along with corresponding representative quotes, are presented below and in Appendix B.

Cognitive responses: Confusion and uncertainty about the meaning of dense breasts

Eleven participants acknowledged that they had received some written report informing them that they had dense breasts; to the remaining 13 participants, BDN information was new. Participants consistently expressed uncertainty about the meaning of ‘dense breasts’ as conveyed in the BDN text that was read to them (Appendix A). This was evident both by their explanations of what dense breasts meant as well as by the hesitant and unsure tone in which they offered these definitions. Expressing her confusion about the text, one participant felt that the BDN provided inconsistent information.

“On one side you are telling me it is harder to detect and then that there is a higher risk. So it makes me question, you know… it is contradicting”

Several participants simply said that they did not understand what dense breasts meant after listening to the BDN text. Others used the literal meaning of the word “dense” to make sense of the information. For example, some participants thought dense breasts indicated the presence of “thick” or “hardened tissue”, “too much tissue”, “lot of fibers” or tissue that is “not soft”. Most participants could not expand on these statements. This lack of understanding contributed to a sense of uncertainty and vulnerability about women’s risk and screening, as detailed in the themes below.

Cognitive responses: Perceiving dense breasts as an abnormal and serious condition

Although the BDN text that was read to participants states that dense breast tissue “is not abnormal”, when asked to describe their understanding of the density information, a number of participants used terms such as “abnormal”, “not normal”, “wrong” or “not right” to describe their interpretation of the information.

“that my mammogram shows if I have, you know, some abnormal … something abnormal in my chest, in my breast”

“When you receive this [information], it is because the test come back wrong”

A few participants stated that having dense breasts may indicate the existence of breast cancer. One participant speculated whether having dense breasts may mean having “tumor residual or an abnormal fiber”. Another participant offered the masking effect of high breast density as the reason why breast density suggests the presence of cancer.

“There is a possibility that you could have cancer, because it’s hard to find, to detect, because it’s so thick.”

Emotional responses: Dense breast information as worrisome and alarming for breast cancer screening

Many participants expressed negative emotional reactions to BDN information, including feelings of worry, stress, and anxiety. Participants’ explanations revealed that these emotions were linked to a sense of vulnerability invoked by the BDN’s emphases of the “possibility of getting cancer” and the danger of missed cancer. To some, the implications of having dense breasts for mammographic detection of cancer elicited a sense of alarm and uneasiness about their future risk and screening needs. Specifically, participants showed apprehension and concern toward the perceived possible need for additional screening tests and anticipated barriers to receiving these services. The following quotes articulate some of these feelings.

“It makes me a little nervous. I know my breasts are dense, because they’ve always told me my breasts are dense. I might have seen it on the old report or something, so with the history that I’ve had and my mother’s history, you’re making me think like maybe I should be ordering more testing. It doesn’t make me feel at ease that I’m absolutely free of it...”

“We have to be more cautious about this, because it is very dangerous. Sometimes you don’t know how your breasts are until you get all these tests. We have to be mindful.”

“Well, you know you always, when they say you’re higher risk to get cancer, you get apprehensive”

“I feel like I am at their [healthcare providers] mercy, because I can’t prescribe a test, only they can. So it’s like you are at the person’s mercy. If they don’t detect anything, I can’t do it.”

Coping responses: Faith and acceptance of destiny

Another theme that emerged from participants’ reaction to dense breasts was the belief that their risks of having dense breasts and developing breast cancer were predetermined. Some participants expressed a strong reliance on faith to help them accept and cope with their destiny with respect to breast cancer. One participant describes her resignation and approach to the possibility of developing breast cancer from having dense breasts:

“If God sends it, then you have to take it. There is nothing to do. Take it calmly”

While reporting a belief in God’s ultimate power in determining their chances of developing cancer, participants also expressed strong motivation and desire to consult with healthcare providers and undergo screening. Several participants stated that God, healthcare providers and screening together help them avoid or cope with their vulnerability to breast cancer. One participant explained her desire to seek additional screening for dense breasts:

“Because [screening] is the only way of knowing what’s happening in the breasts. I am a woman of faith and I believe in God’s plan”.

“I would think that I have to go to the doctor, and God would give me the strength to resist anything that could happen …Anything I could have, I just have to trust God and the doctors”

Behavioral responses: Breast density notification as important and actionable information for breast cancer screening

Most participants appreciated learning more about breast density, and thought the BDN information not only improved their personal awareness, but would also influence their future screening, and coping with a possible breast cancer diagnosis. Simply learning about dense breasts, when no prior knowledge on the topic was available, was also deemed important.

Most participants emphasized the importance of having a proactive approach and being vigilant about obtaining regular mammography screening in response to hearing BDN information. This orientation is consistent with the participants’ overall favorable view of mammography. Most participants also reported intentions for following up with their providers to obtain a clear understanding of their personal breast density. They expressed a strong desire and willingness to undergo additional testing, including more frequent mammograms, to avert the negative consequences of having dense breasts. One woman stated the following:

“I would do everything. I would do my own self-exam. I would have the mammograms done frequently or annually - whatever’s recommended.”

Some participants also reported being highly motivated to pursue supplemental screening tests to learn more about their breasts and ensure early detection of any tumors, as illustrated by this participant.

“I knew that I had dense breast tissue and that this additional screening I suppose is good because I want the information. I want to take care of myself. I don’t want to have cancer and in the event that I have something inside my dense breasts that could be cancerous, I’d like to catch it as early as possible through screening so that we could address it and I could live a longer life with my daughter.”

Although participants generally acknowledged their personal responsibility in adhering to breast cancer screening, they stressed a need for guidance and referrals from their providers and felt that consulting with their providers was an important first step. Few participants reported having had such discussions with their providers, and no one reported undergoing supplemental screening tests because of dense breasts. Several participants thought that they could use BDN information to talk with their providers about their screening plan. One participant said that learning about dense breasts would be a reminder to ask her provider about her next mammogram and breast examination, while other participants said that they would “ask [her] doctor for more information about cancer prevention” or “explore additional screening to make sure that there is nothing within the tissue that is of concern”.

One participant expressed her desire to receive additional screening tests even though her provider did not make such recommendation.

“I have told my doctor about other tests, but she said no; everything is fine. But if someone at the hospital gave me a referral to get other tests, I would do it.”

Recommendations for communicating breast density information

We asked participants to suggest how they prefer to receive information about breast density, and who would be the right person to provide this information. Nearly all the participants stated that healthcare providers are the most appropriate source of information about breast density, with most suggesting primary care physicians as the most suitable type of provider personnel to educate women about breast density. A few participants also suggested healthcare personnel with specific expertise in breast density, including radiologists, radiology technicians and breast surgeons. Several also stressed the importance of an in-person discussion with healthcare providers.

Participants also expressed interest in written educational materials, made available in physician offices, mammography sites or public health clinics. One participant emphasized that an informational pamphlet should accompany the letter containing mammography results and BDN information. A few participants thought information via emails or videos in physicians and hospital waiting areas could serve as an effective way of disseminating information. Additional recommendations included community programs and lectures by medical experts where women can more actively participate in learning about breast density, as well as advertisements and informational pieces on TV, in magazines or displayed in public for reaching a broader audience of women. Finally, several participants recommended the use of internet and social media for distributing information about dense breasts, with two participants proposing “personal stories” of women with dense breasts as an appealing way of engaging women.

DISCUSSION

We investigated Hispanic women’s awareness and understanding of and their reactions to BDN information, which are currently communicated to women with dense breasts in over 30 states, including NYS. Despite having a history of dense breasts, the majority of women in our study did not recall receiving written communication of this information, and were unaware of and unfamiliar with the construct of breast density. These findings are congruent with most survey studies reporting low levels of awareness and understanding of breast density, particularly in racial/ethnic minority and lower socioeconomic status women. ^6–9 Fewer studies to date have assessed women’s knowledge of their personal breast density or women’s understanding of the BDN information that is communicated to women. Importantly, we examined Hispanic women’s immediate comprehension of the notification information after reading the mandated text, which captures a more realistic assessment of the extent to which women unfamiliar with breast density understand the information. Women overall showed a poor understanding of the BDN information with most women acknowledging that the information was unclear and confusing. This poor comprehension of NYS BDN, which currently lacks a definition of breast density and is written at a high literacy level, suggests a need for revising this information, and/or requiring provision of additional information to enable women to accurately understand and act on this information. The majority of women in other states with BDN legislation may reasonably exhibit a similarly low comprehension given that the notification texts in most states have similar content and exhibit higher readability and understandability levels relative to NYS.¹⁵

Women generally reacted to the BDN information with concern, worry and alarm. Women’s uncertainty about the meaning of breast density as well as understanding dense breast as an abnormal and serious health condition appeared to contribute to these emotions. Dense breasts also suggested to women the presence of cancer that was presumably undetected on the mammogram. Two qualitative studies of women in Massachusetts, including one conducted with 19 Spanish-speaking women, have revealed similar high levels of concerns stemming from women’s confusion about the meaning of breast density and their interpretation of breast density as suggesting the presence of breast tumors.^{16, 17} These interpretations of the notification information, while seemingly at odds with the explicit mention of dense breast tissue as common and normal in NYS BDN, can be explained by the description of the effects of dense breasts on risk and early detection, information that was new and alarming to the majority of the women. Furthermore, the recommendation of consulting physicians about dense breasts may appear to regularly screened women as suggesting abnormal mammographic finding, as supported by women’s report that such information in a mammography report would indicate that something is not “right”.

In this study, women’s cognitive and emotional reactions to the BDN prompted two types of general responses. First, women expressed acceptance of having dense breasts as something that was predetermined and could be coped with by relying on their faith. Second, women endorsed strong desires and intentions for obtaining regular or more frequent mammography and any additional testing modalities that would be recommended for women with dense breasts. Interestingly, the two responses were not mutually exclusive and women expressing a belief in destiny and a reliance on faith also supported vigilant screening and follow-up. Specifically, women emphasized that their trust in God and in their healthcare providers enable them to be active in making decisions about breast cancer screening as well as help them cope with the possibility of a cancer diagnosis. These findings challenge the notion that fate and destiny contribute to feelings of powerlessness and hopelessness, and are congruent with other research suggesting that religious beliefs in Caribbean Hispanic women may encourage health behaviors, including cancer screening.^{18, 19}

Although many women reported prior diagnostic breast ultrasound as follow-up to abnormal mammography results, no one reported having received supplemental screening tests solely due to having had dense breasts. This is consistent with the current breast cancer guidelines that only recommend supplemental screening for women who are at elevated risk of breast cancer, and do not include specific recommendations based on breast density alone. Nonetheless, in a growing number of states with BDN legislation, health insurance policies now incorporate breast density as a criterion for providing benefits for breast ultrasound screening,²⁰ and a recent analysis of healthcare data before and after BDN legislation suggest an increase in breast ultrasound and MRI within a short-period of time following screening mammography.²¹ The extent to which organizational practices have changed to provide additional screening in women with dense breasts remains unknown, but are likely to have strong influences on women’s participation in supplemental screening. A study found that women screened at an academic facility serving patients with higher socioeconomic status and those screened at a county hospital serving patients with lower socioeconomic status were similarly strongly interested in receiving supplemental ultrasound for screening dense breasts (94% and 74% respectively), but the willingness to pay out of pocket was substantially higher in women at the academic than at the county facility (70% and 22% respectively).²² Despite a strong desire for pursuing supplemental screening tests, women in our study are unlikely to have the necessary health insurance coverage or other socioeconomic resources for covering the cost of these additional healthcare services. Structural and organizational changes that treat women with dense breasts uniformly and irrespective of women’s personal resources are necessary for avoiding potential socioeconomic disparities in access to clinical risk assessment and supplemental tests.

Women in this study were interested in learning about breast density, and believed that having a knowledge of their personal breast density could help them make more informed decisions about breast cancer screening. This reasoning, which is in line with prior reports^{8, 16, 22} and the motivating force behind advocating for BDN legislation, shows that women value and find the knowledge of their breast density to be consequential for their breast health. Although women recommended varied communication methods ranging from pamphlets to social media outlets, they nearly universally stated that healthcare providers should be the point person to educate women about breast density and many voiced explicit plans to follow up with their providers at their next visit. Reliable and generalizable data on the extent and content of provider-patient discussion on breast density are currently lacking. However, primary care providers, the most common mammography referring providers, may need support for handling patients’ queries and offering screening advice as recent surveys have found that large proportions of primary care providers are unaware of BDN, feel uncomfortable or unprepared to counsel their patients about breast density, and perceive that BDN will not impact clinical practice or informed screening decisions.²³.²⁴ Crucially, clinical or population level interventions should consider breast density within the context of other factors relevant to breast cancer screening and prevention that currently form the basis for risk stratification, including family history of breast cancer, history of breast biopsy and benign breast disease, and reproductive risk factors. Such strategies would be consistent with the growing emphasis on a risk- and preference-based approaches to breast cancer screening.^{25, 26}

We explored women’s perspective on BDN through qualitative interviews and open-ended questions, thereby contributing more in-depth information on emotional, cognitive and behavioral responses to BDN, which has been largely missing in prior research, particularly among immigrant women who may face unique linguistic and healthcare access barriers. ^{17, 22} Additionally, we focused on Hispanic women that have been found to have very low knowledge of breast density in prior studies. ^6–9 Our study sample, while primarily composed of Caribbean Hispanic women recruited from a large urban community mammography clinic, had substantial diversity in sociodemographic characteristics, including educational background and health literacy, and represented nearly equal number of English- and Spanish-speaking women. A recent study found that BDN messages written in English were misinterpreted by Spanish-speaking women, underscoring the importance of more research and intervention to ensure women with limited English language proficiency are able to understand and act on BDN.¹⁷ These findings may not reflect women’s experiences at smaller community clinics or in rural areas. Additionally, we have previously reported a high level of breast cancer worry in the catchment community of this study,^{11, 27, 28} which included regularly screened women with pro-screening attitudes. Thus, our results, particularly in terms of interest in following a more intensive breast cancer screening, may not describe the full breadth of women’s perspectives including those of women with more limited screening history. While we focused on the patient perspective, it will be critical to conduct research among providers and at the systems-level to better understand provider and organizational leadership perspectives on communicating with and managing the care of women with dense breasts.

In conclusion, Hispanic women of varying educational level expressed confusion and a clear lack of comprehension of the NYS BDN information, but conveyed a strong interest in discussing their breast density with their providers and in receiving intensive breast cancer screening, including frequent screening mammogram and supplemental screening tests. Additional educational and healthcare support are needed to help women use breast density information for making informed screening decisions.