Objective: Women are increasingly informed about their breast density due to state density reporting laws. However, accuracy of personal breast density knowledge remains unclear. We compared self-reported with clinically assessed breast density and assessed knowledge of density implications and feelings about future screening.
Methods: From December 2017 to January 2020, we surveyed women aged 40 to 74 years without prior breast cancer, with a normal screening mammogram in the prior year, and ≥1 recorded breast density measures in four Breast Cancer Surveillance Consortium registries with density reporting laws. We measured agreement between self-reported and BI-RADS breast density categorized as "ever-dense" if heterogeneously or extremely dense within the past 5 years or "never-dense" otherwise, knowledge of dense breast implications, and feelings about future screening.
Results: Survey participation was 28% (1,528 of 5,408), and 59% (896 of 1,528) of participants had ever-dense breasts. Concordance between self-report versus clinical density was 76% (677 of 896) among women with ever-dense breasts and 14% (89 of 632) among women with never-dense breasts, and 34% (217 of 632) with never-dense breasts reported being told they had dense breasts. Desire for supplemental screening was more frequent among those who reported having dense breasts 29% (256 of 893) or asked to imagine having dense breasts 30% (152 of 513) versus those reporting nondense breasts 15% (15 of 102) (P = .003, P = .002, respectively). Women with never-dense breasts had 6.3-fold higher odds (95% confidence interval:3.39-11.80) of accurate knowledge in states reporting density to all compared to states reporting only to women with dense breasts.
Discussion: Standardized communications of breast density results to all women may increase density knowledge and are needed to support informed screening decisions.
Keywords: Breast density; breast density notification; patient-reported outcomes; screening mammography.
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