Publications of the Angelina Jolie effect

A survey carried out in the USA [15] found that although 75% of Americans were aware of Angelina Jolie’s double mastectomy, fewer than 10% of respondents had the information necessary to accurately interpret her risk of developing cancer relative to a woman unaffected by the BRCA gene mutation. Awareness of the Angelina Jolie story was not associated with improved understanding. However, 9% of women were motivated to do something about their health, such as seeing a doctor, having a mammogram or seeing a genetic counselor. The increased level of appropriate referrals in the UK may reflect a similar effect. The authors concluded that although celebrities can bring heightened awareness to health issues, there is a need for these messages to be accompanied by more purposeful communication efforts to assist the public understanding. There is no evidence from the current study that the story led to inappropriate referrals although it is possible that primary care physicians had to see many women who were unnecessarily worried about breast cancer, or observed an increased need for BRCA testing in the months following the revelation. It is likely that the release of NICE guidance with the attendant publicity may have made it easier to deal with the onslaught of enquiries about familial breast cancer. It is also likely that given the high level of appropriate referrals received in clinics, that the triage process set up in the 1990s is still effective today. Nevertheless, the high number of appropriate referrals means that many women will have been either unaware of the relevance of their family history or hiding concerns such that so many newly identified women and families could come forward in a 7-month period.

Similar stories

A similar effect on health service activity happened six years ago, when a reality TV star Jade Goody was diagnosed with and then died of cervical cancer [16]. There are parallels in the media coverage around this UK story as there were multiple news items over several months. A study, in the Journal of Medical Screening, discussed the effect of her diagnosis and death on cervical screening attendance [17]. It showed that more than 400,000 extra women were screened in England between mid 2008 and mid 2009 - the period during which Jade Goody was diagnosed with and died of cervical cancer.

More women of all ages were screened, though the increase was greater for women aged <50 years. In the 25 to 29 years age-group, an estimated 31,000 extra women were screened in 5 months between autumn 2008 and spring 2009. It appeared that women closest to Jade Goody’s age or circumstances were those most affected by her experience [18]. Data from 890 participants showed that 40% of women felt Goody’s story had influenced their decisions about cervical screening. Younger women (aged 26 to 35 years) were more likely to have been influenced by Goody’s story than older women [18].

A similar trend was seen in bowel cancer screening in the USA after Katie Couric’s colorectal cancer awareness campaign on colonoscopy rates on the Today Show in March 2000 [19]. The number of colonoscopies performed per month after Ms Couric’s campaign increased significantly (15.0 per month before and 18.1 per month after the campaign; P <0.001). After adjusting for temporal trends, a significantly higher post-campaign colonoscopy rate was sustained for 9 months [19].

Although there was concern that the increase in attendance might have been from the so-called worried-well coming back for an early repeat screen, the research found that the opposite was true. A higher proportion was from women who were late for their test, rather than those who were coming back early [18]. In the 25 to 49 years age group, for example, 82,000 (28%) women had not been tested for five years or longer, while only 7,500 (8%) were coming back early, having already been screened in the past three years. The increase in appropriate use of health service resources from the Jade Goody effect appears similar to that of the Angelina Jolie effect. Other examples of notable women increasing or changing the use of health resources include a 40% increase in breast screening in Australia with the news around Kylie Minogue’s diagnosis [20], and a 6-month 25% increase in mastectomy for breast cancer after Nancy Reagan’s decision not to have breast-conserving surgery in 1987 [21]. All these stories, including the current one, show that health news around high profile individuals can have a sustained effect for at least 6 months in influencing the uptake of healthcare. We have shown that for Angelina Jolie the effect has been UK-wide as well as the reported global effects [2]-[7]. The increased awareness of familial cancer in the community alongside improvements in genetic testing, screening and preventative strategies, provides funding challenges for clinical genetic services and commissioners.

There are some limitations in the descriptive nature of the present study and ideally a prospective study immediately investigating motivations for referral would likely have added support to the findings. Future studies might anticipate a celebrity providing publicity in a healthcare area and design studies to gain a more in-depth understanding of referral patterns.