The Angelina Jolie effect: how high celebrity profile can have a major impact on provision of cancer related services

Abstract

IntroductionIt is frequent for news items to lead to a short lived temporary increase in interest in a particular health related service, however it is rare for this to have a long lasting effect. In 2013, in the UK in particular, there has been unprecedented publicity in hereditary breast cancer, with Angelina Jolie’s decision to have genetic testing for the BRCA1 gene and subsequently undergo risk reducing mastectomy (RRM), and a pre-release of the NICE guidelines on familial breast cancer in January and their final release on 26th June. The release of NICE guidelines created a lot of publicity over the potential for use of chemoprevention using tamoxifen or raloxifene. However, the longest lasting news story was the release of details of film actress Angelina Jolie’s genetic test and surgery.MethodsTo assess the potential effects of the ‘Angelina Jolie’ effect, referral data specific to breast cancer family history was obtained from around the UK for the years 2012 and 2013. A consortium of over 30 breast cancer family history clinics that have contributed to two research studies on early breast surveillance were asked to participate as well as 10 genetics centres. Monthly referrals to each service were collated and increases from 2012 to 2013 assessed.ResultsData from 12 family history clinics and 9 regional genetics services showed a rise in referrals from May 2013 onwards. Referrals were nearly 2.5 fold in June and July 2013 from 1,981 (2012) to 4,847 (2013) and remained at around two-fold to October 2013. Demand for BRCA1/2 testing almost doubled and there were also many more enquiries for risk reducing mastectomy. Internal review shows that there was no increase in inappropriate referrals.ConclusionsThe Angelina Jolie effect has been long lasting and global, and appears to have increased referrals to centres appropriately.Electronic supplementary materialThe online version of this article (doi:10.1186/s13058-014-0442-6) contains supplementary material, which is available to authorized users.

Clinical utility of a Web-enabled risk-assessment and clinical decision support program

“…However, more patients in the increased-risk group perceived their risk to be high, suggesting that they were aware of their risk but not always ready to act on it. An additional finding is that MeTree did not lead to an unwarranted increase in increased-risk services such as genetic counseling (e.g., the Angelina Jolie effect 38 ). In this study, there was only one instance when a patient's concern led to a referral that was not recommended by MeTree.…”

Media portrayal of non-invasive prenatal testing: a missing ethical dimension

“…Although Jolie's prophylactic mastectomy received unprecedented publicity and contributed to the salience of the issues of hereditary breast/ovarian cancer, the extended media coverage did not increase the public understanding of cancer risks and who should be tested for BRCA 1/2 mutations [Kamenova, Reshef and Caulfield, 2013;Borzekowski et al, 2013]. Rather, a considerable upsurge in requests for BRCA 1/2 genetic testing was observed after her disclosure, particularly from individuals at low risk for hereditary breast/ovarian cancer [MacCuaig, 2014;Evans et al, 2014]. This case clearly highlights the impact of mass media on shaping the public discourse on health issues and influencing patients' demand for services.…”

Análise de custo-efetividade de programa para diagnóstico de mutação germinativa em genes BRCA1/2 e de estratégias preventivas para pacientes com câncer de ovário e seus familiares de primeiro grau

“…Estudos de coorte prospectiva sobre penetrância envolvendo mutação germinativa e desenvolvimento de neoplasia maligna de ovário (34,38,(109)(110)(111)(112) .............. 146 Tabela 39. Estudos de coorte prospectiva sobre penetrância envolvendo mutação germinativa e desenvolvimento de neoplasia maligna de mama (39,(117)(118)(119)(120)(121)(122)(123)(124) . ................. 147 Tabela 40.…”

“…Infelizmente, a mídia cometeu falhas em enfatizar a frequência da condição, promovendo impacto na demanda pela realização de testes genéticos (122,145) . Ainda assim, é possível que a atitude da atriz represente potencial efeito encorajador para a realização de cirurgia redutora de risco entre portadores de mutação germinativa (122) .…”

“…Estas informações foram corroboradas por outra revisão sistemática (125) e diversos estudos prospectivos (109,(117)(118)(119)(120)(121)(122)(123)(124)146) . Neste sentido, é importante destacar a distribuição majoritária, dentro da amostra de pacientes com câncer de ovário do projeto principal, de portadores de mutação germinativa no gene BRCA1.…”