Women’s perceptions of dense breast notifications in a Massachusetts safety net hospital: “So what is that supposed to mean?”
Introduction
Since 2009, 30 states have adopted legislation requiring mammography providers to provide written notification to women with dense breast tissue seen on a mammogram [1]. Approximately 40–50% of women receiving mammograms have dense breasts, representing over 27 million women ages 40–74 in the United States [2]. While the content of state notifications differs slightly, 28/30 (93%) explicitly state that having dense breasts increases cancer risk and all mention that having dense breasts makes it more difficult to detect cancer on a mammogram (see [3] for details on state legislation). Information about these risks is often accompanied by the suggestion that women speak with their doctors and/or pursue supplemental screening with ultrasound or magnetic resonance imaging (MRI).
Dense breast notifications have the potential to alter women’s perceptions of their breast cancer risk or change screening behaviors. While these laws aim to empower women [4], the impact of notifications remains uncertain. Survey research indicates that legislation may increase awareness of breast density and knowledge about its impact on cancer risk and mammography sensitivity [5]. However, awareness varies by patient factors (race/ethnicity, income, health beliefs) [7] and setting (academic vs. county hospitals) [6]. The legislation is also associated with greater use of supplemental MRI and ultrasound [[8], [9]]. These studies have quantitatively examined the anticipated changes in specific knowledge and attitudes resulting from dense breast notifications, but there are potential emotional, social, and behavioral responses that have yet to be characterized. Previously we found that the notifications were written at a high literacy level (mean Flesch-Kincaid score of grade 10.5 across 24 states; range: 7–19.4) [3]. Given the generally high literacy level of these notifications, there is a significant potential for misinterpretation that may impact patient beliefs, attitudes, knowledge and participation in follow-up care. To explore a fuller range of women’s perceptions of receiving a dense breast notification and their intentions for follow-up care beyond what is possible with survey research, we conducted a qualitative study of women receiving mammograms in one Massachusetts safety-net hospital to elicit their experience after receiving a dense breast notification.
Section snippets
Methods
This qualitative interview study assessed women’s awareness regarding notification of breast density, understanding of the notification’s content, and planned or actual follow-up care. Massachusetts’ notification law requires that specific information be communicated to patients, including: 1) Whether and to what degree dense breast tissue was identified on their mammogram; 2) The fact that dense breast tissue is common and not abnormal; 3) Direction to informational resources; 4) The fact that
Results
Over the course of three months, 202 invitations to participate were sent. Of these, 76 opted out after contact and 68 participants were not reached despite three attempts (Fig. 1). Fifty-eight participants were fully screened and 40 were eligible, recalling receipt of the dense breast notification. Thirty women completed qualitative interviews via telephone from July through October 2015. The ten who did not participate despite being eligible either did not respond to further contact, did not
Discussion and conclusion
Through our screening process, we determined that most women (81%) recalled receiving a dense breast notification, but when we interviewed 29 women about its content, few could describe important elements. Women described their struggle to understand the meaning of breast density, many reported feeling worried about the implications for their health, and many created their own explanatory model (or misperceptions) of dense breasts. Most women interviewed planned to or did talk with their
Funding
This work was supported by AcademyHealth [Grant #2016. 997.003]. Dr. Kressin is supported in part by aVeterans Affairs Senior Research Career Scientist Award (RCS02-066).
Acknowledgements
We would like to acknowledge the contributions of Eileen Howard, Allison Tonge, and Akanksha Srivastava in collecting participant data for this study.
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