Women’s perceptions of dense breast notifications in a Massachusetts safety net hospital: “So what is that supposed to mean?”

doi:10.1016/j.pec.2018.01.017

Patient Education and Counseling

Volume 101, Issue 6, June 2018, Pages 1123-1129

https://doi.org/10.1016/j.pec.2018.01.017 Get rights and content

Highlights

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The concept of breast density was unfamiliar and confusing to many women.
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Few recalled breast density notification content about cancer risk and masking bias.
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Women preferred specific and coordinated verbal communication about breast density.
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Women had many misperceptions about the implications of having dense breasts.

Abstract

Objective

Currently, 30 US states mandate that radiologists notify women when dense breast tissue is found on mammography. Little is understood about how notifications are perceived by recipients. This qualitative study sought to understand how dense breast notifications (DBNs) impact women’s perceptions and their participation in follow-up care.

Methods

We assessed rates of DBN recall and conducted semi-structured telephone interviews with 30 English-speaking women ages 40 to 74 after receiving a DBN from a Massachusetts hospital. Content coding characterized women’s recall of the notification content, perceptions of breast density, and planned or actual participation in follow-up care.

Results

Most women (81%) recalled receiving a DBN, but few could recall specific content. Women described struggling to understand the meaning of breast density and created their own explanatory models of dense breasts that differed from medical explanations. Many women planned to or did talk with their doctors about breast density as a result of receiving the notification.

Conclusions

Women receiving DBNs have limited knowledge and many misperceptions about the implications of having dense breasts.

Practice implications

Educational support is needed to promote informed decision- making about breast cancer screening that incorporates personal risk in the setting of dense breast legislation.

Introduction

Since 2009, 30 states have adopted legislation requiring mammography providers to provide written notification to women with dense breast tissue seen on a mammogram [1]. Approximately 40–50% of women receiving mammograms have dense breasts, representing over 27 million women ages 40–74 in the United States [2]. While the content of state notifications differs slightly, 28/30 (93%) explicitly state that having dense breasts increases cancer risk and all mention that having dense breasts makes it more difficult to detect cancer on a mammogram (see [3] for details on state legislation). Information about these risks is often accompanied by the suggestion that women speak with their doctors and/or pursue supplemental screening with ultrasound or magnetic resonance imaging (MRI).

Dense breast notifications have the potential to alter women’s perceptions of their breast cancer risk or change screening behaviors. While these laws aim to empower women [4], the impact of notifications remains uncertain. Survey research indicates that legislation may increase awareness of breast density and knowledge about its impact on cancer risk and mammography sensitivity [5]. However, awareness varies by patient factors (race/ethnicity, income, health beliefs) [7] and setting (academic vs. county hospitals) [6]. The legislation is also associated with greater use of supplemental MRI and ultrasound [[8], [9]]. These studies have quantitatively examined the anticipated changes in specific knowledge and attitudes resulting from dense breast notifications, but there are potential emotional, social, and behavioral responses that have yet to be characterized. Previously we found that the notifications were written at a high literacy level (mean Flesch-Kincaid score of grade 10.5 across 24 states; range: 7–19.4) [3]. Given the generally high literacy level of these notifications, there is a significant potential for misinterpretation that may impact patient beliefs, attitudes, knowledge and participation in follow-up care. To explore a fuller range of women’s perceptions of receiving a dense breast notification and their intentions for follow-up care beyond what is possible with survey research, we conducted a qualitative study of women receiving mammograms in one Massachusetts safety-net hospital to elicit their experience after receiving a dense breast notification.

Section snippets

Methods

This qualitative interview study assessed women’s awareness regarding notification of breast density, understanding of the notification’s content, and planned or actual follow-up care. Massachusetts’ notification law requires that specific information be communicated to patients, including: 1) Whether and to what degree dense breast tissue was identified on their mammogram; 2) The fact that dense breast tissue is common and not abnormal; 3) Direction to informational resources; 4) The fact that

Results

Over the course of three months, 202 invitations to participate were sent. Of these, 76 opted out after contact and 68 participants were not reached despite three attempts (Fig. 1). Fifty-eight participants were fully screened and 40 were eligible, recalling receipt of the dense breast notification. Thirty women completed qualitative interviews via telephone from July through October 2015. The ten who did not participate despite being eligible either did not respond to further contact, did not

Discussion and conclusion

Through our screening process, we determined that most women (81%) recalled receiving a dense breast notification, but when we interviewed 29 women about its content, few could describe important elements. Women described their struggle to understand the meaning of breast density, many reported feeling worried about the implications for their health, and many created their own explanatory model (or misperceptions) of dense breasts. Most women interviewed planned to or did talk with their

Funding

This work was supported by AcademyHealth [Grant #2016. 997.003]. Dr. Kressin is supported in part by aVeterans Affairs Senior Research Career Scientist Award (RCS02-066).

Acknowledgements

We would like to acknowledge the contributions of Eileen Howard, Allison Tonge, and Akanksha Srivastava in collecting participant data for this study.

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Cited by (33)

The impact of breast density notification on psychosocial outcomes in racial and ethnic minorities: A systematic review
2024, Breast
High breast density is an independent risk factor for breast cancer and decreases the sensitivity of mammography. This systematic review synthesizes the evidence on the impact of breast density (BD) information and/or notification on women's psychosocial outcomes among women from racial and ethnic minority groups.
A systematic search was performed in March 2023, and the articles were identified using CINHAL, Embase, Medline, and PsychInfo databases. The search strategy combined the terms “breast”, “density”, “notification” and synonyms. The authors specifically kept the search terms broad and did not include terms related to race and ethnicity. Full-text articles were reviewed for analysis by race, ethnicity and primary language of participants. Two authors evaluated the eligibility of studies with verification from the study team, extracted and crosschecked data, and assessed the risk of bias.
Of 1784 articles, 32 articles published from 2003 to 2023 were included. Thirty-one studies were conducted in the United States and one in Australia, with 28 quantitative and four qualitative methodologies. The overall results in terms of breast density awareness, knowledge, communication with healthcare professionals, screening intentions and supplemental screening practice were heterogenous across studies. Barriers to understanding BD notifications and intentions/access to supplemental screening among racial and ethnic minorities included socioeconomic factors, language, health literacy and medical mistrust.
A one-size approach to inform women about their BD may further disadvantage racial and ethnic minority women. BD notification and accompanying information should be tailored and translated to ensure readability and understandability by all women.
Women's Reactions to Breast Density Information Vary by Sociodemographic Characteristics
2023, Women's Health Issues
Breast density information aims to increase awareness of breast density and its risks and to foster more informed future breast screening decisions among women with dense breasts. We explored associations between such information and outcomes including anxiety, confusion, or feeling informed, and whether they varied by race/ethnicity or literacy, or differentially affected future mammography plans.
A national telephone survey of a diverse sample of women previously informed of personal breast density (N = 1,322) assessed reactions to receipt of breast density information and future mammography plans.
Most women (86%) felt informed after receiving personal breast density information; however, some felt anxious (15%) or confused (11%). Reactions varied significantly by sociodemographics; non-Hispanic Black, Asian, and Hispanic women and women with low literacy were nearly two to three times more likely to report anxiety than non-Hispanic White women (all ps < .05). Asian women and those with low literacy less often felt informed and more often felt confused. Non-Hispanic Black and Asian women were nearly twice as likely to report that knowing their breast density made them more likely to have future mammograms. Women with low literacy were more likely to change mammography plans, with some being more likely and others less likely to plan to have future mammograms. Greater anxiety and confusion were associated with higher likelihood of planning future mammograms; those feeling informed were less likely to plan future mammography.
Differential reactions to breast density information are concerning if associated with disparate future screening plans. Future breast density education efforts should ensure that such information is readily accessible and understandable to all women in order to lead to desired effects.
A letter is not enough: Women's preferences for and experiences of receiving breast density information
2022, Patient Education and Counseling
Despite evidence of disparate uptake of breast density (BD) information, little is known about diverse women’s preferences for and experiences learning about BD.
Telephone survey among 2306 racially/ethnically and literacy diverse women; qualitative interviews with 61 survey respondents. Responses by participant race/ethnicity and literacy were examined using bivariate, then multivariable analyses. Interviews were content-analyzed for themes.
Most women (80%) preferred learning of personal BD from providers, with higher rates among Non-Hispanic Black (85%) than Non-Hispanic White women (80%); and among Non-Hispanic White than Asian women (72%, all ps<0.05). Women with low literacy less often preferred receiving BD information from providers (76% v. 81%), more often preferring written notification (21% vs. 10%); women with high literacy more often preferred learning through an online portal (9% vs 3%). Most women (93%) received BD information from providers (no between group differences). Qualitative findings detailed women’s desires for obtaining BD information from providers, written information, and visual depictions of BD.
When educating women about BD, one size does not fit all.
Additional educational methods are needed beyond written BD notifications to sufficiently address the varying informational needs and preferences of all USA women.
“It's about our bodies… we have the right to know this stuff”: A qualitative focus group study on Australian women's perspectives on breast density
2022, Patient Education and Counseling
This study aimed to explore Australian women’s current knowledge, perspectives and attitudes about breast density (BD); and information needs to inform effective evidence-based communication strategies.
Fourteen online focus group sessions with a total of 78 women in New South Wales and Queensland, Australia aged 40–74 years without a personal diagnosis of breast cancer were conducted. Audio-recorded data was transcribed and analysed thematically.
Women had a very limited knowledge of BD. Overall, women expressed a preference for more frequent mammograms and/or supplemental screening should they be told they had dense breasts, despite being presented with information on potential downsides of additional testing. The majority of women were supportive of the notion of BD notification, often suggesting they had a ‘right to know’ and they would prefer to be educated and informed about it.
The potential of being informed and notified of BD is found to be of interest and importance to Australian women of breast screening age despite lacking current knowledge.
This study highlights that policy makers and screening services need to consider how to weigh up these views and preferences of women with current evidence surrounding BD in deciding about implementing population-based BD notification.
Breast Density Knowledge and Awareness Among Latinas in a Low-Resource Setting
2022, Journal of the American College of Radiology
Citation Excerpt :
These educational efforts may also facilitate patient-provider conversations and education or counseling regarding MBD [16,18].
Latinas in low-resource settings face additional barriers to understanding mammographic breast density (MBD) implications. The authors compared MBD awareness and knowledge in Latinas from a safety-net clinic in Arizona with a national sample.
Latinas 40 to 74 years of age were recruited within a safety-net clinic during screening mammography appointments from 2016 to 2019 (AZ cohort) and from a nationally representative online panel in 2017 (NS cohort). Surveys completed in either English or Spanish assessed awareness and knowledge of MBD. Chi-square tests and logistic regression were used for comparisons.
The NS cohort (n = 152) was older, more educated, more likely to have undergone prior mammography, and more likely to prefer English compared with the AZ cohort (n = 1,327) (P ≤ .03 for all) The NS cohort was more likely to be aware of MBD (32.6% versus 20.7%). Of those aware, the NS cohort was more likely to understand MBD’s effect on masking (67.8% versus 37.0%) and breast cancer risk (72.2% versus 32.6%) compared with the AZ cohort (P ≤ .001 for all). Adjusting for age, education, screening history, and language, MBD awareness was similar between the two cohorts (adjusted odds ratio [ORadj], 0.95; P = .83), but knowledge of MBD as a masking factor (ORadj, 2.8; P = .03) and risk factor (ORadj, 7.2; P < .001) remained higher in the NS cohort compared with the AZ cohort.
Differences in MBD awareness, but not knowledge, between Latinas in a low-resource setting compared with a national sample could be explained by age, education, screening history, and language preference, underscoring the need for tailored approaches to MBD education among Latinas.
Adding value in the era of COVID-19: Increasing usage of a patient-centered radiology consultation service
2021, Clinical Imaging
To examine the effects of COVID-19 pandemic on our department's Radiology Consultation Service (RCS) related to breast imaging, and how utilization of the provided services may have differed as compared to prior to the pandemic.
A retrospective cohort study of patients and health care providers who consulted the RCS, as well as those patients who had a screening mammogram and/or ultrasound between January 1, 2019 and September 1, 2020. Consultations were performed by an RRA, RN and one of 17 breast imaging radiologists assigned to consults on daily. Descriptive statistics were performed to describe the study subject population.
Between January 1, 2020 and July 31, 2020, a total of 1623 consultations were performed, in comparison to the control period from the year prior (January 1, 2019 to July 31, 2019), when a total of 1398 consultations were performed, representing a 16% increase in one year. Between March 1, 2020 and June 30, 2020, a total of 679 consultations were performed, in comparison to the control period from the year prior (March 1, 2019 to June 30, 2019), when 583 consultations were performed, representing a 16.5% increase in a four-month period. 350 out of 679 (36.8%) consultations addressed COVID concerns.
While much of radiology experienced an unprecedented decrease in imaging studies during the initial peak of COVID-19 crisis, the RCS at our institution showed a significant increase in services provided, evolving to address pressing concerns related to COVID-19.

View all citing articles on Scopus

View full text

Women’s perceptions of dense breast notifications in a Massachusetts safety net hospital: “So what is that supposed to mean?”

Highlights

Abstract

Objective

Methods

Results

Conclusions

Practice implications

Introduction

Section snippets

Methods

Results

Discussion and conclusion

Funding

Acknowledgements

J. Am. Coll. Radiol. JACR

Patient Educ. Couns.

NursingPlus Open

Patient Educ. Couns.

Breast

Cancer Detect. Prev.

Prevalence of mammographically dense breasts in the United States

J. Natl. Cancer Inst.

Content, readability, and understandability of dense Breast notifications by state

JAMA

The divide between breast density notification laws and evidence- based guidelines for breast cancer screening

JAMA Int. Med.

Awareness of breast density and its impact on breast cancer detection and risk

J. Clin. Oncol.

The effect of California’s breast density notification legislation on breast cancer screening

J. Primary Care Commun. Health

Screening US in patients with mammographically dense breasts: initial experience with connecticut public act 09–41

Radiology

An Act Relative to Breast Cancer Early Detection, House No. 3733

Breast Imaging Reporting and Data System Atlas

Why people use health services

Milbank Memorial Fund Q.

The Health Belief Model and Personal Health Behavior CB Slack

Qualitative Reserach Methods for the Social Sciences

From text to codings: intercoder reliability assessment in qualitative content analysis

Nurs. Res.

Accounting for overlap? An application of Mezzich’s κ statistic to test interrater reliability of interview data on parental accident and emergency attendance

J. Adv. Nurs.