Breast density notification increases levels of confusion and anxiousness among women

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Credit illustrissima / Adobe Stock
Credit illustrissima / Adobe Stock

New research by experts at the University of Sydney shows that breast density notification is leaving some women confused and anxious about their breast health. Breast density notification is being rolled out across Australia, but evidence suggests that women do not feel more informed by it. Between 25 and 40% of women have denser breast tissue, which can make it harder for cancers to be detected through a mammogram.

Media release

From: The University of Sydney

Breast density notification increases levels of confusion and anxiousness among women

  • Breast density notification is being rolled out across Australia, but evidence suggests that women do not feel more informed by it
  • Between 25 and 40 percent of women have denser breast tissue which can make it harder for cancers to be detected through a mammogram

New research by experts at the University of Sydney shows that breast density notification is leaving some women confused and anxious about their breast health.

The notification program is designed to advise women that their breast density is a risk for developing cancer, as well as highlighting that dense breasts could prevent cancer from being observed on a mammogram.

Breast density notification is currently being rolled out across Australia, and is already mandatory in the US, but until now there has been no high-quality research into the impact of these notifications on women.

Lead author of the British Medical Journal study, Dr Brooke Nickel from the School of Public Health, said: “Breast density notification is based on the premise that giving women information will empower them to make individual choices about their health.

“In theory this is a really good thing but what we found in practice was that breast density notification made women more confused and anxious about their breast health. Women also did not feel more informed.”

Estimates suggest that between 25 and 40 percent of women have denser breast tissue which can increase the risk of developing cancer and make it harder for cancers to be detected through a mammogram.

For women with denser breasts, further screening via ultrasound, MRI and contrast-enhanced mammography has been shown to detect cancers. However, most of these additional screening methods mean out-of-pocket costs for women, and the long-term benefits in terms of mortality rates, as well as unintended adverse consequences, such as widening health inequality, are not well-evidenced.

Carrying out the research

To understand the impact of breast density notification, the researchers carried out a randomised control trial involving 2401 women across 13 BreastScreen sites in Queensland between September 2023 and July 2024.

As part of the randomised controlled trial, women identified as having dense breasts received one of three outcomes:

  1. a notification of breast density in their screening results letter plus a leaflet with additional information about having denser breasts;
  2. notification of breast density in the results letter plus a link to online video-based health literacy-sensitive information;
  3. no notification of breast density in their results letter (control group).

Significantly, 11.5 percent and 9 percent of the two intervention groups respectively reported feeling confused after receiving a breast density notification alongside a normal screening result, compared to only 2.7 percent of women in the control group.

Levels of anxiousness among the participants about what to do regarding their breast health were also higher in the intervention groups, rising to 20.8 percent (outcome 1) and 20.5 percent (outcome 2) respectively, compared to the 18 percent of women in the control group.

Both notified groups also had significantly higher intention to talk to their GP about their screening results – 22.8 percent and 19.4 percent respectively – compared with only 12.9 percent in the control group.

Dr Nickel said: “Creating confusion and worry for women about their breast health is not a good outcome. And while it might seem positive that notified women want to seek further advice from their GP, there is currently limited evidence-based clinical pathways that GPs can offer, with most of the suggested recommendations leaving women with out-of-pocket costs.

"Internationally, we encourage governments to consider gathering additional data on beneficial and equitable clinical pathways and to plan the provision of breast density information carefully to ensure that the benefits of breast density notification outweigh potential harms for all women.”

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Research BMJ Group, Web page
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Organisation/s: The University of Sydney
Funder: This work was supported by a National Health and Medical Research Council (NHMRC) Emerging Leader Research Fellowship (1194108) to BN and a National Breast Cancer Foundation chair in breast cancer prevention grant (EC-21-001) to NH. KM (2016719) and NH (1194410) are supported by NHMRC investigator (leader) fellowships. This work was also supported by the Cancer Screening Unit, Department of Health, Queensland Government. The funders of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report. The views in this manuscript represent the views of the authors and not necessarily those of the Queensland Department of Health. Competing interests: All authors have completed the ICMJE uniform disclosure form at https://www.icmje.org/disclosure-of-interest/ and declare: the study was supported by the National Health and Medical Research Council, the National Breast Cancer Foundation, and the Cancer Screening Unit, Department of Health, Queensland Government; BN and KM are members of the International Scientific Committee of Preventing Overdiagnosis; NOS, LH, KB, PL, and PV were all employed by Queensland Health, including the Cancer Screening Unit and BreastScreen Queensland services where the trial was run; KM is the president of the International Society of Shared Decision Making and board director of Health Literacy Solutions Ltd Party (both unpaid); PV was a programme manager representative on the BreastScreen Australia National Policy Clinical Advisory Group 2023- 24; NH was a member of the BreastScreen Australia National Policy Review Expert Advisory Group 2023-25; no other relationships or activities that could appear to have influenced the submitted work.
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