NICE referral criteria could fail to identify up to 95% of women under 50 who go on to develop breast cancer within ten years, researchers find.

 NHS criteria for identifying younger women at increased risk of breast cancer may need to be broadened, scientists have suggested.

A study by the University of Cambridge and the Institute of Cancer Research found that up to 95% of women under 50 who went on to develop breast cancer within ten years would not have met the criteria for referral to a specialist breast cancer service, as outlined by the National Institute for Health and Care Excellence (NICE).

Its guidance places significant weight on family history when deciding whether women should be referred for a risk assessment.

However, most of the women in the study who subsequently developed breast cancer did not have a family history that would have triggered referral.

Scientists analysed data from more than 1,200 women aged under 50 taking part in the Breast Cancer Now Generations Study, which is following thousands of people over the course of 40 years to understand the causes of the disease. The researchers compared the current criteria with a risk assessment tool, named BOADICEA, that combines family history with genetics, lifestyle and reproductive history.

BOADICEA identified around eight times as many women under 50 who went on to develop breast cancer as the current NICE criteria.

In light of these findings, published in the British Journal of Cancer, NICE criteria should be looked at again, said Juliet Usher-Smith, the study’s senior author and associate professor in general practice at the university.

“We need to get better at identifying women at highest risk of breast cancer so that we can intervene early,” Usher-Smith added.

Heavy burden on resources

However, changing the criteria would lead to more referrals, including for women who would not develop breast cancer. And it would place a “heavy burden” on resources, said Montserrat Garcia-Closas, physician epidemiologist and expert at the Institute of Cancer Research.

It will be a trade-off between the practical and cost implications of further assessments and the potential benefits and harms “associated with accurate and inaccurate classification of women,” Garcia-Closas added.

A second study from the team found strong support among the public for proactive approaches to breast cancer risk assessment for women aged between 30 and 49, rather than waiting for women to come forward with concerns about their family history.

Researchers are now testing how a multi-factor risk assessment could be implemented safely and cost-effectively in routine care.

While previous studies have shown that more in-depth risk models can identify more women at increased risk of breast cancer than family history alone, this is the first study to directly evaluate this approach in a UK population-based cohort of women aged under 50.

A NICE spokesperson welcomed the findings and recognised the potential of such multifactorial risk models. However, they said the current evidence does not warrant a change to existing guidelines. NICE will consider further updates as more data on feasibility and clinical outcomes become available, they added.