Knowledge and Perception of Breast Density, Screening Mammography, and Supplemental Screening: in Search of “Informed”

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.

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Acknowledgments

The authors wish to thank all our research partners in the Breast Cancer Surveillance Consortium who collaborated on participant recruitment and implementation of the focus groups. We are especially grateful to all the women who participated in the focus groups. We thank the participating women, mammography facilities, and radiologists for the data they have provided for this study. A list of the BCSC investigators is provided at: http://www.bcsc-research.org/.

Funding

Research reported in this work was funded through a Patient-Centered Outcomes Research Institute (PCORI) award (PCS-1504-30370). Data collection for this research was additionally supported by the Breast Cancer Surveillance Consortium with funding from the National Cancer Institute (P01CA154292, U54CA163303).

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Correspondence to Karen E. Schifferdecker PhD, MPH.

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The authors have no conflicts of interest.

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The statements presented in this work are solely the responsibility of the authors and do not necessarily represent the official views of PCORI, its Board of Governors or Methodology Committee, the National Cancer Institute, or the National Institutes of Health.

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Schifferdecker, K.E., Tosteson, A.N.A., Kaplan, C. et al. Knowledge and Perception of Breast Density, Screening Mammography, and Supplemental Screening: in Search of “Informed”. J GEN INTERN MED 35, 1654–1660 (2020). https://doi.org/10.1007/s11606-019-05560-z

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KEY WORDS

  • screening
  • breast cancer
  • qualitative
  • patient preferences
  • patient education