Researchers have found that breast density notifications alone are an ‘ineffective’ way of driving GP visits and supplemental screening.
Notifying women of dense breast tissue is thought to encourage further screening, but a Queensland trial found no increase in GP visits or supplemental screening after 12 months, and left women more confused and no better informed.
The trial, published in The Lancet Primary Care, was conducted across 13 BreastScreen Queensland sites and included 3107 women aged 40 and over who attended screening and were found to have dense breast tissue.
Approximately 25 to 40% of women of mammography-screening age have heterogeneously or extremely dense breast tissue.
In Western Australia, South Australia, Victoria, and New South Wales, breast density notification at mammographic screening is now required or recommended, but there is no consensus on supplemental screening, researchers said.
Women were allocated to three arms in the trial – the control being standard care (no notification to women) and two intervention arms – a leaflet or a video.
“[The leaflet] was a two-page evidence-based health literacy-sensitive leaflet that we co-designed with BreastScreen Queensland, with consumers,” lead author and senior research fellow at the University of Sydney Dr Brook Nickel said.
“In the other intervention arm, that same resource was turned into about a three- to four-minute video or infographic.”
“What we’ve found in our 12-month follow-up is that women don’t feel any more informed, and there’s no difference in whether they go to see their GP to discuss their breast screening results or attend any supplemental screening, including ultrasound, MRI, or contrast-enhanced mammography,” she said.
Overall, only 89 (5%) of women underwent supplemental screening. Of these, 78% had a negative result, approximately 15 women (17%) were referred for further investigation, and two were diagnosed with malignancy.
Of the 326 women who said they would discuss their results with the GPs in the 8-week post-notification survey, 62% did so – what researchers called an “intention-behaviour gap”.
Researchers attributed this to potential barriers for women to act on the information, but the possible reasons had not yet been explored in the trial.
Notifications also had psychological implications. Women who received the leaflet had significantly higher odds of feeling anxious (21%) than the control group (19%), while the video group (19%) did not differ significantly.
However, both notified groups reported feeling significantly more confused about what to do regarding their breast health, with 13% of the leaflet group and 12% of the video group agreeing, compared with just 5% of the controls.
Moreover, almost half (43%) of the control group strongly agreed they felt informed about their breast health, compared with 33% in the leaflet group and 35% in the video group – despite higher breast density knowledge scores.
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The information covered what breast density meant, what women could potentially do, and the benefits and harms of different supplemental screening pathways.
Of the 3107 eligible women, 2401 completed the initial questionnaire 8 weeks after screening. All were re-invited to complete the 12-month questionnaire between October 2024 and July 2025, and 1785 (57%) did so. The remaining 43% were lost to follow-up.
Self-reported questionnaire data would also be collected at 24 to 27 months post-screening, although Dr Nickel said she did not expect a drastic change in the findings.
Although resources and guidelines had helped GPs become more informed about breast density in recent years, follow-up still fell to women, she said.
“Women have to [foot] out-of-pocket costs to access additional screening, or additional mammography. So, it makes it really tricky for GPs to know what best to advise,” Dr Nickel told TMR.
“The majority of Australia is getting notified about breast density. I think it now really becomes this question of equitable pathways for women and how those can be implemented within the screening program, so that all women can potentially have the same access to further information and further screening, if they so wish,” she said.
The researchers also said screening programs had to decide between density-adapted screening using supplemental imaging, or evolving towards risk stratification, citing the WISDOM trial as an alternative to age-based screening. Adherence was also found to be suboptimal.
The study commenced before BreastScreen Australia’s position statement in November 2024, which recommended that women be informed in writing of their breast density, Dr Nickel said.
“We’re not going to go backwards, but we need to start thinking forward about how we make this effective.”
Read the full report here.
