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Cancer screening: The stars are aligned
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In recent weeks, important new studies have added more data to the ongoing debate about the effectiveness of screening programs for breast cancer and prostate cancer.
These studies provide more information about the tradeoff between early disease detection and the opportunity for cure vs. the risks when intervening for subclinical disease that might never progress to impact a patient’s health.
Media influence
One of the publications focused on patient-reported outcomes with respect to the management of clinically localized prostate cancer — an important, previously poorly investigated aspect of this debate.
These patient-reported outcome data aggregate the experience of a large number of patients who have faced a challenging decision about the best management of screen-detected disease against a backdrop of uncertainty and strong opinions. What gets lost in these large datasets are the individual experiences and preferences that play into — and often overwhelm — the scientific pros and cons of each decision.
The disclosure by actor Ben Stiller of his personal decision regarding management of his localized prostate cancer — detected by PSA screening — brought this issue to the attention of the media and the public in September and October.
The initial flurry of attention on national TV and radio appears to have subsided, but it raises the question of whether media coverage of celebrities with cancer diagnoses has an overall positive or negative effect on the cancer health–related behaviors of the public — particularly behaviors with respect to cancer screening and prevention.
It seems clear that media coverage of cancer issues in celebrities and public figures results in a big spike in information seeking. The announcement of President Ronald Reagan’s colon cancer diagnosis resulted in a fourfold increase in calls to the Cancer Information Service regarding colon cancer.
Similar trends have been shown for other celebrities.
Perhaps the best-documented example of this phenomenon is the massive increase in inquiries and online searches regarding breast cancer risk and prophylactic mastectomy following actress Angelina Jolie’s May 2013 announcement in The New York Times that she underwent prophylactic double mastectomy after testing positive for a BRCA1 mutation. Compared with the preceding 6 weeks, there was a 112% increase in inquiries for general information regarding breast cancer on the day of the announcement, and the volume of inquiries stayed 35% higher for the following week. Inquiries regarding genetics increased by 2,145%, and treatment inquiries increased 9,900%.
All of this online activity returned to baseline after 2 weeks. The spikes in activity were comparable with those seen each October during Breast Cancer Awareness Month.
The longer-term impact of media coverage is less clear.
Researchers at Johns Hopkins conducted a questionnaire-based, online survey of more than 2,500 adults in June 2013, about 3 weeks after Jolie’s article in The New York Times was published. Researchers wanted to understand which components of the story were retained and understood by the public, whether those surveyed understood the concepts and magnitude of risk associated with the BRCA1 mutation, whether the story had prompted them to seek advice from a health care provider, and whether they adopted cancer prevention behaviors as a result.
The major conclusions of the study were that awareness of the story was high (74% of those surveyed), but less than 10% of respondents were able to understand the breast cancer risk for those not carrying the BRCA1 mutation. In fact, many respondents thought the lack of the mutation meant that they had a lower-than-average risk for developing breast cancer. The researchers involved with this study drew attention to the role that health journalists can take in overcoming this gap in understanding.
Changes in behavior
Another potential role for health-related media in this situation is to be aware of and curb the potential for publication bias.
For example, a study that investigated media reports of celebrity breast cancer in the United States showed an increase since 2004, with a dramatic increase in articles covering bilateral mastectomies in 2008. They reported that the overall “positive tone” of these reports increased, and that the use of surgery was more likely to be mentioned if the celebrity had a bilateral mastectomy rather than unilateral mastectomy or breast-conserving surgery. Most articles (60%) that described bilateral mastectomy made no mention of risk, genetics or family history.
Although the short-term impact of media attention on information seeking is clear, does this translate into a change in health-related behavior?
Some data suggest this may be so. A study conducted in the United Kingdom examined the effect of the Angelina Jolie story on referrals to clinics focused on familial breast cancer and associated high risk. This study also had a control period. A few months prior to the Jolie story, the U.K. National Institute of Health and Care Excellence (NICE) had issued guidelines on familial breast cancer and the potential use of chemoprevention in high-risk patients.
A marginal rise in referrals for chemoprevention was attributed to the NICE guidelines. In contrast, referrals rose by 250% in June and July 2013, and a 200% increase was sustained through October of that year. Requests for BRCA1 testing doubled, and there was an associated increase in referrals for consideration of risk-reducing mastectomy. These referrals were deemed appropriate for the majority of patients.
Celebrity cancer diagnoses also can result in changes in screening behaviors. A 40% increase in mammography occurred in Australia following Kylie Minogue’s breast cancer diagnosis. The announcement of a cervical cancer diagnosis for British TV personality Jane Goody resulted in a 43% increase in appointments for Pap smears in the United Kingdom.
The use of primary prevention can increase, too. When former Brazilian President Lula de Silva announced his laryngeal cancer diagnosis, queries to smoking cessation websites increased dramatically over the following 4 weeks, peaking at the third week and returning to baseline after about a month. This increase was much higher — more than 1.1 million total inquiries — than those seen following events such as World No Tobacco Day or Brazil’s National No Smoking Day.
This relatively superficial look at these data has changed my perspective on the role that major celebrities can have on cancer-related behaviors. I previously thought the individual stories of movie stars — although important and valid in their own right, because they speak to individual experiences — have the potential to obscure scientific data and weigh public opinion too heavily on one side or another of a controversial issue, therefore potentially harming thoughtful efforts to educate.
What emerges from the literature is that, even though the general population may not fully understand the complexities of some of the treatment decisions and risk factors described by movie stars, these stories often provoke people to get screened or look at prevention and that the effect appears to be more powerful than conventional cancer awareness campaigns. The effect appears to be bigger for those celebrities who are most widely known and respected.
Despite the fact that we may question the individual decisions of celebrities and wonder whether their highly publicized decisions can undermine our advice to our patients and provoke many additional questions in the clinic, there seems to be an overall benefit from the heightened awareness they bring to an issue. We will need to wait and see whether the publicity regarding Ben Stiller’s decision will provoke men to undergo excessive PSA testing.
Overall, we should welcome the heightened profile celebrities can bring to cancer-related issues and be happy that the stars are aligned with us!
References:
Ayers JW, et al. Prev Med. 2014;doi: 10.1016/j.ypmed.2013.11.007.
Borzekowski DL, et al. Genet Med. 2014;doi:10.1038/gim.2013.181.
Donovan JL, et al. N Engl J Med. 2016;doi:10.1056/NEJMoa1606221.
Evans DG, et al. Breast Cancer Res. 2014;doi:10.1186/s13058-015-0650-8.
Hamdy FC, et al. N Engl J Med. 2016;doi:10.1056/NEJMoa1606220.
Jolie A. My medical choice. The New York Times. Available at: www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0. Accessed on Oct. 19, 2016.
Noar SM et al. Med Decis Making. 2015;doi:10.1177/0272989X14556130.
Sabel MS and Dal Cin S. Ann Surg Oncol. 2016;doi:10.1245/s10434-016-5202-7.
Welch HG, et al. N Engl J Med. 2016;doi:10.1056/NEJMoa1600249.
For more information:
John Sweetenham, MD, is HemOnc Today’s Chief Medical Editor for Hematology. He also is senior director of clinical affairs and executive medical director of Huntsman Cancer Institute at University of Utah. He can be reached at john.sweetenham@hci.utah.edu.
Disclosure: Sweetenham reports no relevant financial disclosures.