'Angelina Jolie effect' doubled breast gene tests

“Referrals to breast cancer clinics more than doubled in the UK after Angelina Jolie announced she had had a double mastectomy,” BBC News reports. NHS services saw a sharp rise in referrals from women worried about their family history of breast cancer.

In May 2013, actress Angelina Jolie announced that she had decided to undergo a double mastectomy followed by breast reconstruction surgery, as gene testing estimated she had an 87% chance of developing breast cancer.

Examination of trends in genetic testing clinics in the UK showed that there was a peak in referral rates in June and July, with numbers standing at around two-and-half times higher than the previous year. There was almost a doubling in requests for predictive genetic tests for cancer risk genes, and many more enquiries about preventative mastectomy. Researchers were also encouraged by finding that all referrals to genetic or family history clinics were appropriate (that the so-called “worried well” weren’t diverting resources from where they were needed).

This study can’t prove a direct cause and effect, but the evidence seems compelling.

The researchers also speculate that, as Angelina Jolie is seen as a glamorous icon, her decision may have reassured women who fear that preventative surgery would make a woman less attractive.

The actress would have been well within her rights to keep her health confidential, particularly knowing the media interest it would create. Her decision to speak out and help destigmatise mastectomies should be congratulated.

Where did the story come from?

The study was carried out by researchers from the University Hospital of South Manchester NHS Trust, and the Manchester Centre for Genomic Medicine at St. Mary’s Hospital. Financial support was provided by the Genesis Breast Cancer Prevention Appeal and Breast Cancer Campaign.

The study was published in the peer-reviewed medical journal Breast Cancer Research on an open-access basis, so it is free to read online.

The UK media’s reporting was generally accurate, though the Daily Mirror got a little confused with its headline "'Angelina Jolie effect' credited for huge rise in double mastectomies to reduce breast cancer risk”.

The effect did cause a rise in the number of women being tested to see if a double mastectomy was required. However, the research didn't look at the number of operations carried out. As most of the tests would have actually proved negative, the impact on the number of operations is unlikely to have been a “huge rise”.

What kind of research was this?

This was a review of breast cancer-related referrals to family history clinics and genetics services within the UK for 2012 and 2013, to see how the trends changed between the two years.

As the researchers discuss, it is common for news items related to a particular health service to lead to a short-term temporary increase in interest. There is rarely a long-lasting effect once the media attention has died down. For example, the 2009 death of reality TV star Jade Goody from cervical cancer led to a shortlived increase in the number of young women attending cervical cancer screening appointments.

In 2013, there was said to be “unprecedented publicity of hereditary breast cancer” in the UK. This was associated with two things. First came the release of draft guidance from the National Institute of Health and Care Excellence (NICE) on familial (hereditary) breast cancer in January, followed by the final publication in June 2013. Second, and seemingly more significant, was the high-profile news reports that broke in May 2013 of actress Angelina Jolie’s decision to undergo a double mastectomy when finding that she had inherited the BRCA1 gene – putting her at high risk of developing breast cancer.

Studies suggested that the news stories were associated with increases in attendance at hereditary breast cancer clinics and genetics services in the US, Canada, Australia, New Zealand and the UK. This study assessed the potential effects of the “Angelina Jolie effect” by looking at UK referrals due to breast cancer family history in the UK for the year 2012 compared to 2013.

What did the research involve?

This research looked at referrals specific to breast cancer for 21 centres in the UK. This included 12 of 34 family history clinics invited to participate, and nine of 19 regional genetics centres. Centres that did not supply data were reported to either not have this available, or were unable to collate the data. Monthly referrals to each centre for 2012 and 2013 were assessed, and the trends analysed. 

What were the basic results?

The results show that overall referral rates were 17% higher in the period January to April 2013 than they had been in the previous year (the draft NICE guidance on familial breast cancer hit the media in January 2013, prior to final publication in June). However, there was nearly a 50% rise in May 2013, which was too early to have been associated with the final publication of NICE guidance, and coincided with the media reports about Angelina Jolie.

In June and July 2013, referral rates to the clinics were 4,847 – two-and-a-half times as many as in the same period the previous year (1,981 in 2012). From August to October, they were around twice as high as they had been in the same period the previous year. The referral rates then settled down again to being 32% higher in November and December 2013 than in November and December 2012.

In total, referrals rose from 12,142 in 2012 to 19,751 in 2013. There was almost a doubling in requests for BRCA1/2 testing, and many more enquiries about preventative mastectomies.

Encouragingly, internal reviews from specific centres show that there was no increase in inappropriate referrals.

How did the researchers interpret the results?

The researchers conclude that, “the Angelina Jolie effect has been long-lasting and global, and appears to have increased referrals to centres appropriately”.

Conclusion

This is an interesting study that reviewed how the trends in breast cancer-related referrals to breast cancer family history clinics and genetics centres in the UK changed between 2012 and 2013. The overall results show an increase in 2013, with particular peaks following high-profile media events – most notably, news of Angelina Jolie’s decision to have a double mastectomy in May of that year.

However, there are a couple of points to bear in mind when interpreting these results.

Firstly, the study did not have data available from all family history clinics and genetics centres in the UK, and the results are only representative of 40% of those who would have been eligible to participate. Therefore, it is not known whether the trends would be the same were data available from all services. However, this is a good representation, so is likely to give a good indicator.

Studies such as this can assess trends, but it is still not possible to know the direct cause of any changes. As this study says, there were two related events that received media attention in 2013: the publication of NICE guidance on familial breast cancer (pre-publication in January and final publication in June); and the higher-profile news reports in May of Angelina Jolie’s decision to have a double mastectomy due to her high risk of developing familial breast cancer.

While it may be plausible that the rises in referral rates to family history and genetics clinics were associated with this increased media attention, particularly the “Angelina effect”, it still cannot be proven that this is the only cause. Alternatively, the increase in trend could also be related to a gradual year-on-year increase in people’s health awareness.       

It would be interesting to see how trends changed in years prior to 2012. It would also be interesting to know what has happened to the trend in referral rates through 2014. 

Overall, the particular peaks in referral rates in June and July 2013 suggest that the news related to Angelina Jolie, perhaps combined with the publication of NICE guidance on familial breast cancer testing around this time, have a high chance of being associated with the increased referral rates.

This is not surprising given the thought-provoking influence that the media is known to have.

It is also encouraging to know that all referrals to genetic or family history clinics were appropriate, suggesting that the media attention is likely to have had a positive effect in increasing health awareness.