Rebecca E Smith1, Brian Sprague2, Louise M Henderson3, Karla Kerlikowske4, Diana L Miglioretti5, Diana S M Buist6, Karen J Wernli7, Tracy Onega8, Karen Schifferdecker9, Gloria Jackson-Nefertiti10, Dianne Johnson10, Jill Budesky10, Anna N A Tosteson11. 1. The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, Lebanon, New Hampshire. Electronic address: Rebecca.E.Smith.gr@Dartmouth.edu. 2. Associate Professor of Surgery, Director of the Vermont Breast Cancer Surveillance System, and Senior Epidemiologist at the Vermont Center on Behavior and Health, Department of Surgery and University of Vermont Cancer Center, University of Vermont, Burlington, Vermont. 3. Professor of Radiology, Director of the Carolina Mammography Registry, and Director of the North Carolina Lung Screening Registry, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina. 4. Professor of Medicine and Epidemiology and Biostatistics, Co-Director of the Women's Clinic, and Director of the Women's Health Fellowship at the San Francisco Veterans Affairs Medical Center, Departments of Medicine and Epidemiology and Biostatistics, University of California, San Francisco, California. 5. Dean's Professor and Division Chief of Biostatistics, Department of Public Health Sciences, University of California, Davis, CA, USA; Principal Investigator of the Breast Cancer Surveillance Consortium (BCSC) Administrative Core, and Affiliate Scientific Investigator, Kaiser Permanente Washington Health Research Institute, Kaiser Permanente Washington, Seattle, Washington. 6. Affiliate Professor of Epidemiology, Affiliate Professor of Health Systems and Population Health, and Director of Research and Strategic Partnerships, Kaiser Permanente Washington Health Research Institute, Kaiser Permanente Washington, Seattle, Washington. 7. Affiliate Associate Professor of Epidemiology and Affiliate Associate Professor of Health Systems and Population Health, Kaiser Permanente Washington Health Research Institute, Kaiser Permanente Washington, Seattle, Washington. 8. Jon M. and Karen Huntsman Presidential Professor in Cancer Research, Senior Director of Population Sciences, and Professor of Population Health Sciences, Department of Population Health Science, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah. 9. Associate Professor, and Director of the Center for Program Design and Evaluation, The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, Lebanon, New Hampshire. 10. Department of Public Health Sciences, University of California, Davis, California. 11. James J Carroll Professor, The Dartmouth Institute for Health Policy and Clinical Practice, and Departments of Medicine and of Community and Family Medicine, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA; and Associate Director for Population Sciences, Norris Cotton Cancer Center, Geisel School of Medicine at Dartmouth, Lebanon, NH USA.
Abstract
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.
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.
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