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

Pacsi‐Sepulveda, Alsacia L.; Shelton, Rachel C.; Rodríguez, Concepción Fernández; Coq, Arielle T.; Tehranifar, Parisa

doi:10.1002/cncr.32002

Cited by 18 publications

(44 citation statements)

References 26 publications

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“…Although radiologists believe that patient knowledge has increased because of density notification laws, empirical 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 . Additional research is needed to clarify observed patterns, particularly in light of the rapidly changing policy landscape.…”

Section: Introductionmentioning

confidence: 99%

“…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 Cancer April 15, 2020 observed patterns, particularly in light of the rapidly changing policy landscape.…”

Section: Introductionmentioning

confidence: 99%

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Prior breast density awareness, knowledge, and communication in a health system–embedded behavioral intervention trial

Mahorter

Knerr

Bowles

et al. 2020

Cancer

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Background Breast density is an important breast cancer risk factor and a focus of recent national and state health policy efforts. This article describes breast density awareness, knowledge, and communication among participants in a health system–embedded trial with clinically elevated breast cancer risk 1 year before state‐mandated density disclosure. Methods Trial participants' demographics and prior health history were ascertained from electronic health records. The proportions of women reporting prior breast density awareness, knowledge of density's masking effect, and communication with a provider about their own breast density were calculated using baseline interview data collected from 2017 to 2018. Multiple logistic regression was used to estimate associations between women's characteristics and density awareness, knowledge, and communication. Results Although 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 (odds ratio [OR], 2.97; 95% confidence interval [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) compared with an infrequent or unknown screening interval. 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.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Prior breast density awareness, knowledge, and communication in a health system–embedded behavioral intervention trial

Mahorter

Knerr

Bowles

et al. 2020

Cancer

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“…Our brochure could be used in combination with other tools to support women receiving mandatory dense breast notification and improve patient understanding. Future work should focus on development of similar materials in other languages [ 24 , 25 ], and assess their impact on patient psychosocial and behavioral outcomes.…”

Section: Discussionmentioning

confidence: 99%

Evaluation of existing patient educational materials and development of a brochure for women with dense breasts

et al. 2020

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Objectives: In this pilot study, we developed and assessed acceptability of a brochure for women with dense breasts. Material and methods: We measured Flesch-Kincaid Readability of 22 existing breast density educational materials. We then developed a brochure and tested it in two populations of women: 44 safety net hospital patients and 13 Breast Cancer Surveillance Consortium stakeholders. Results: Average grade score of existing materials was 10.0 (range: 5.5e12.7). Our brochure had a grade score of 5.9, and patients reported it was easy to understand. Conclusion: Our plain language brochure could improve patient understanding following mandatory dense breast notification.

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“…The effect of providing women with notification about their MBD and its impact on breast cancer risk without accompanying education may have unintended consequences, particularly among Latinas with lower health literacy and limited resources. Two recent qualitative studies with Hispanic women found that MBD notification language was confusing and led to misinterpretation, including misunderstanding of key concepts like masking and breast cancer risk [9, 10]. While MBD notification language elicited worry and anxiety among some women, the majority in one of the studies reported a desire for MBD notification and potential for it to influence future screening, including pursuit of supplemental screening modalities [10].…”

Section: Introductionmentioning

confidence: 99%

“…Two recent qualitative studies with Hispanic women found that MBD notification language was confusing and led to misinterpretation, including misunderstanding of key concepts like masking and breast cancer risk [9, 10]. While MBD notification language elicited worry and anxiety among some women, the majority in one of the studies reported a desire for MBD notification and potential for it to influence future screening, including pursuit of supplemental screening modalities [10]. The likelihood of disparities emerging between women who can pursue supplemental breast screening and women who are less able to do so is also an important consideration [11].…”

Section: Introductionmentioning

confidence: 99%

Behavioral and psychological impact of returning breast density results to Latinas: study protocol for a randomized clinical trial

Patel

Ridgeway

Ghosh

et al. 2019

Trials

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BackgroundBreast cancer is the most common cancer and the leading cause of cancer mortality among Latinas. As more is learned about the association between mammographic breast density (MBD) and breast cancer risk, a number of U.S. states adopted legislation and now a federal law mandates written notification of MBD along with mammogram results. These notifications vary in content and readability, though, which may limit their effectiveness and create confusion or concern, especially among women with low health literacy or barriers to screening. The purpose of this study is to determine whether educational enhancement of MBD notification results in increased knowledge, decreased anxiety, and adherence to continued mammography screening among Latina women in a limited-resources setting.MethodsLatinas LEarning About Density (LLEAD) is a randomized clinical trial (RCT) comparing the impact of three notification approaches on behavioral and psychological outcomes in Latina women. Approximately 2000 Latinas undergoing screening mammography in a safety-net community clinic will be randomized 1:1:1 to mailed notification (usual care); mailed notification plus written educational materials (enhanced); or mailed notification, written educational materials, plus verbal explanation by a promotora (interpersonal). The educational materials and verbal explanations are available in Spanish or English. Mechanisms through which written or verbal information influences future screening motivation and behavior will be examined, as well as moderating factors such as depression and worry about breast cancer, which have been linked to diagnostic delays among Latinas. The study includes multiple psychological measures (anxiety, depression, knowledge about MBD, perceived risk of breast cancer, worry, self-efficacy) and behavioral outcomes (continued adherence to mammography). Measurement time points include enrollment, 2–4 weeks post-randomization, and 1 and 2 years post-randomization. Qualitative inquiry related to process and outcomes of the interpersonal arm and cost analysis related to its implementation will be undertaken to understand the intervention’s delivery and transferability.DiscussionLegislation mandating written MBD notification may have unintended consequences on behavioral and psychological outcomes, particularly among Latinas with limited health literacy and resources. This study has implications for cancer risk communication and will offer evidence on the potential of generalizable educational strategies for delivering information on breast density to Latinas in limited-resource settings.Trial registrationClinicalTrials.gov, NCT02910986. Registered on 21 September 2016.Items from the WHO Trial Registration Data Set can be found in this protocol.

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

Cited by 18 publications

References 26 publications

Prior breast density awareness, knowledge, and communication in a health system–embedded behavioral intervention trial

Prior breast density awareness, knowledge, and communication in a health system–embedded behavioral intervention trial

Evaluation of existing patient educational materials and development of a brochure for women with dense breasts

Behavioral and psychological impact of returning breast density results to Latinas: study protocol for a randomized clinical trial

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