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J Gen Intern Med. 2019 Dec 2. doi: 10.1007/s11606-019-05560-z. [Epub ahead of print]

Knowledge and Perception of Breast Density, Screening Mammography, and Supplemental Screening: in Search of "Informed".

Author information

1
Department of Community and Family Medicine, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA. Karen.E.Schifferdecker@dartmouth.edu.
2
The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA. Karen.E.Schifferdecker@dartmouth.edu.
3
Center for Program Design and Evaluation at Dartmouth (CPDE), Lebanon, NH, USA. Karen.E.Schifferdecker@dartmouth.edu.
4
Department of Community and Family Medicine, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA.
5
The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA.
6
Department of Medicine, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA.
7
Norris Cotton Cancer Center, Geisel School of Medicine at Dartmouth and Dartmouth-Hitchcock Health System, Lebanon, NH, USA.
8
Department of Medicine, University of California, San Francisco, CA, USA.
9
Department Epidemiology and Biostatistics, University of California, San Francisco, CA, USA.
10
General Internal Medicine Section, University of California, San Francisco, CA, USA.
11
Department of Veterans Affairs, University of California, San Francisco, CA, USA.
12
Kaiser Permanente Washington Health Research Institute, Seattle, WA, USA.
13
Department of Radiology, University of North Carolina, Chapel Hill, NC, USA.
14
Department of Public Health Sciences, University of California, Davis, Davis, CA, USA.
15
Department of Biomedical Data Science, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA.
16
Department of Epidemiology, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA.

Abstract

BACKGROUND:

As of 2019, 37 US states have breast density notification laws. No qualitative study to date has examined women's perspectives about breast density in general or by states with and without notification laws.

OBJECTIVE:

Explore women's knowledge and perceptions of breast density and experiences of breast cancer screening across three states with and without notification laws.

DESIGN:

Qualitative research design using four focus groups conducted in 2017.

PARTICIPANTS:

Forty-seven women who had a recent normal mammogram and dense breasts in registry data obtained through the Breast Cancer Surveillance Consortium.

APPROACH:

Focus groups were 90 min, audio recorded, and transcribed for analysis. Data were analyzed using mixed deductive and inductive coding.

KEY RESULTS:

Women reported variable knowledge levels of personal breast density and breast density in general, even among women living in states with a notification law. A number of women were aware of the difficulty of detecting cancer with dense breasts, but only one knew that density increased breast cancer risk. Across all states, very few women reported receiving information about breast density during healthcare visits beyond being encouraged to get supplemental imaging or to pay for new mammography technology (i.e., breast tomosynthesis). Women offered more imaging or different technology held strong convictions that these were "better," even though knowledge of differences, effectiveness, or harms across technologies seemed limited. Women from all states expressed a strong desire for more information about breast density.

CONCLUSIONS:

More research needs to be done to understand how the medical community can best assist women in making informed decisions related to breast density, mammography, and supplemental screening. Options to explore include improved breast density notifications and education materials about breast density, continued development of personalized risk information tools, strategies for providers to discuss evidence and options based on risk stratification, and shared decision-making.

KEYWORDS:

breast cancer; patient education; patient preferences; qualitative; screening

PMID:
31792869
DOI:
10.1007/s11606-019-05560-z

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