Challenging Dogma - Spring 2008

...Using social sciences to improve the practice of public health

Tuesday, April 22, 2008

Failure to Follow Through: How the OvarianCancerAwareness.org Campaign Leaves Massachusetts Women Scared and Helpless – Emily White

Introduction
Ovarian cancer is a very serious disease that afflicts more than 20,000 women each year (1). Diagnosis of ovarian cancer is extremely problematic because there is currently no reliable screening test for early detection of the disease. While several methods are used to try and detect the presence of ovarian cancer, surgery is the only fool-proof method of diagnosis. Due to these challenges, it is often detected only after it has spread to other parts of the body (2). For this, ovarian cancer has earned the nickname “The Silent Killer.” While the five-year survival rate for cases detected before the disease spreads is 92%, only 19% of cases are detected at this stage. The overall 5-year survival rate is only 45% (1).
In 2007, the Gynecologic Cancer Foundation announced the first national consensus on ovarian cancer symptoms. This consensus lists symptoms such as bloating, gas, abdominal pain, urinary symptoms, and difficulty eating and recommends that women experiencing these symptoms daily for longer than two weeks should consult a physician (3). The statement also encourages women to ask to see a gynecologic oncologist if ovarian cancer is suspected. In response to the consensus statement, several Massachusetts organizations teamed up to form the OvarianCancerAwareness.org coalition. The coalition is responsible for developing and carrying out the OvarianCancerAwareness.org campaign (4), which began in September 2007, for National Ovarian Cancer Awareness month, and will continue to campaign each year. The campaign consists of a two-pronged approach. One component targets clinicians and legislators in an attempt to change practice while the other targets the general population to increase awareness of symptoms and courses of action. This critique will focus on the latter portion of the campaign, which utilizes many different media including the website itself (ovariancancerawareness.org), television commercials, transit and outdoor advertisements, pay stub enclosures for state employees, cards given at tollbooths, and radio broadcasts (5).
The OvarianCancerAwareness.org campaign is based on the principles of the Health Belief Model (HBM) developed in the 1950s which states that an individual will engage in a particular health behavior if perceived susceptibility and severity of not engaging in the behavior are both high, there are clear and worthwhile benefits to engaging in the recommended behavior, and the barriers to engaging in the behavior are low (6). The HBM, however, does not address many important factors that may play a role in health behavior because it assumes that rational thinking leads directly to action and neglects any of the intervening factors that may exist (7). The OvarianCancerAwareness.org campaign in Massachusetts attempts to reach women at risk for ovarian cancer in an effort to make them more aware of the disease and to teach them how to respond to early warning signs. The campaign, however, in its reliance on the health belief model, stops short of being truly inspiring or educational. It relies heavily on the distribution of scientific information and assumes that this alone will compel women to take action, all the while failing to acknowledge the needs of its target audience.

Failure to Consider the Informational Needs of the Target Audience
The OvarianCancerAwareness.org campaign utilizes its website as the primary method of contact with the target audience (4). The website is available in Spanish, Portuguese, and English and includes pages for basic information about the coalition and ovarian cancer, survivor stories, a quiz to test users’ knowledge of ovarian cancer, and links to collaborating institutions and other ovarian cancer resources. The site also lists an email address to request further information; however, it is no longer a valid address and messages addressed to it are returned to the sender (8). Also available through the main website is a webcast that aired live in September 2007 and can be downloaded for viewing at any time. All of the other media used by the campaign (transit advertisements, television commercials, paystub enclosures, etc) provide very basic information, then direct people to the website for details.
Despite utilizing various media for the dissemination of information, the OvarianCancerAwareness.org campaign fails to reach the target audience because it neglects the main tenets of social marketing theory. Social marketing theory is based on the concept of using marketing analysis and planning to affect a social agenda. In the case of a public health campaign, this means identifying the social and psychological needs of the target audience, then meeting these needs (9). Social marketing theory is a powerful tool for reaching narrowly-targeted audiences such as women at the highest risk for developing ovarian cancer.
A major failure of the OvarianCancerAwareness.org campaign, a social marketing campaign by nature, lies in the coalition’s neglect to consider the needs of its target population. Risk of developing ovarian cancer increases with age and is highest among women in their 70s (10). This subset of women should arguably be targeted most aggressively by this campaign. It is clear, however that the OvarianCancerAwareness.org coalition did not consider the needs of this high-risk group in developing the campaign. As of 2004, only 63% of persons over the age of 55 have internet access in the home (11). Any woman who not does have internet access is unlikely to view the website directly. In addition, because all components of the campaign lead the consumer back to the website for additional information, women who do not have internet access may simply ignore the other media completely. For those who are able to access the website, they will find a site that gives very limited information on ovarian cancer symptoms and provides no instruction for women who have the listed symptoms (12). For detailed information, women must view the hour-long webcast available for download. The webcast, however, in addition to being lengthy, is very technical in places. It uses scientific and medical jargon to detail the staging and biologic basis of ovarian cancer and is likely to lose the interest of the average viewer who may not understand these details. The spokespersons featured in the webcast are ineffective speakers and do not provide a new or fresh perspective on the issue. Overall, the campaign attempts to disseminate information without considering how best to do so based on the highest risk population and, therefore, fails to reach its target audience.

Failure to Promote Self-Efficacy
Assuming the OvarianCancerAwareness.org campaign is able to reach members of the target audience, the campaign then fails to inspire self-efficacy among women at risk and, therefore, does not send a compelling message. The campaign relies heavily on the dissemination of statistics with the assumption that these statistics alone will inspire women to take action. The statistics provided (1), however, are discouraging because they imply that the survival and early-detection rates are so low that there may be no hope. Advertisements and spokespersons for the campaign commonly use discouraging language to describe ovarian cancer screening throughout various media, referring to the “Silent Killer” and “subtle” early symptoms, and informing the target audience that very little is known about ovarian cancer prevention or detection (5). In addition, these media draw attention to the differing opinions on effective prevention, diagnosis, and treatment that currently exist in the scientific community (13) and acknowledge that physicians often do not take the early symptoms of ovarian cancer seriously (5), both of which make for a weak campaign message.
The importance of self-efficacy in health behavior models was first introduced by Albert Bandura (14). The theory of self-efficacy explains that in order for an individual to engage in a particular behavior, he or she must believe that they are capable of successfully completing the behavior, and that doing so will produce desired results. Self-efficacy has been shown to play an important role in behavior change and be good predictor of behavior (15) . The OvarianCancerAwareness.org campaign blatantly ignores this important component of behavior by failing to make women think that they can make any difference. Experts tell women directly that their doctors will likely not listen to them if they present with the symptoms described, then solidify this hopelessness with statistics that show them how dismal it is even if they do take action. In addition, the campaign, in offering different views of ovarian cancer prevention, fails to commit to and then communicate a single confident message. The message women receive, therefore, is that ovarian cancer is deadly, that it may affect them, that a particular set of symptoms may be associated with the disease, but that there is little they can do about it, particularly since the experts cannot even agree on a clear course of action. Women are left with uncertainty, not self-efficacy. This low self-efficacy decreases their likelihood of following the OvarianCancerAwareness.org Coalition’s recommendation to seek medical care in response to the early symptoms of ovarian cancer because the behavior may be viewed as ineffectual. Women may not expect to be heard by their physicians or not feel capable of self-advocating. Moreover, because early detection is so difficult from a medical standpoint, it may not be clear that the seeking medical care will elicit better health outcomes. If women do not believe they can make any difference, they will likely simply choose not to try. In failing to inspire self-efficacy in the target audience, the OvarianCancerAwareness.org campaign becomes self-defeating and, therefore, ineffective.

Failure to Address Barriers to Obtaining Healthcare
In a critical failure of the campaign, the OvarianCancerAwareness.org coalition fails to acknowledge or address the unique barriers that women face in obtaining healthcare and, in doing so, fails to adequately educate women at risk. Women, by virtue of gender alone, have been traditionally underserved by the healthcare system. In a broad sense, women have been socialized to be passive recipients of medical care, often from male physicians. This socialization is based on a long history of oppression and gender disparities in the healthcare profession. This plays out in healthcare relationships wherein physicians often see women’s complaints as trivial or based on neurotic disorders. This has bred a culture where women do not receive adequate healthcare (16). The HBM, in its reliance on individual factors to explain behavior disregards these important societal truths (17). These issues are particularly salient in elderly women, who are at the highest risk for developing ovarian cancer (1). As a result of general ageism in the population, elderly women are virtually invisible in most areas of society, and particularly so in medical literature (18). Moreover, women of all ages are known to be less likely to advocate for themselves in opposition of their doctors’ opinions. Women have been found to be less assertive and have lower self-esteem than men (19) and, therefore, may require additional skill training to become effective self-advocates, particularly in confrontations with authority. In order to be effective in communicating concerns with their physicians, women need to learn how best to educate and advocate for themselves (20). Without these crucial skills, women are simply unable to respond appropriately to warnings about ovarian cancer. In neglecting to consider these aspects of women’s experiences, the recommendations of the OvarianCancerAwareness.org campaign fall flat.
In addition to ignoring factors true for all women, the OvarianCancerAwareness.org campaign also disregards socioeconomic barriers that influence health behavior. These factors may include lack of access to basic healthcare, including insurance and physician care for members of the target population. Among those who do have financial access, there may be additional barriers to obtaining the care recommended by the campaign. Women may be unable to receive care from a gynecologic oncologist based purely on where they live. Rural women, in particular, may be affected by this barrier. As of 2008, there are three U.S. states (Idaho, North Dakota and Wyoming) where no board-certified gynecologic oncologists practice. In other states such as Maine, Alaska, Alabama, New Hampshire, Utah and New Mexico there are only a few of these specialists, and they are concentrated in a single city, making them difficult to access for a large subset of the population (21). While the OvarianCancerAwareness.org campaign recommends that women demand to see a gynecologic oncologist, in many cases this is a completely unrealistic recommendation. In this scenario, even the most self-aware and conscientious women may be left worried and helpless. By failing to address these barriers to healthcare, the OvarianCancerAwareness.org campaign provides information to women but does not give them enough skills or resources to take appropriate action. The campaign, therefore, cannot be truly effective and may be psychologically detrimental to many women.

Conclusion
The OvarianCancerAwareness.org campaign is ineffective in its attempt to educate women and raise awareness about ovarian cancer because it fails to inspire self-efficacy in the target population, is not based on the needs and wants of the target population, and does not address the barriers that women face in obtaining the recommended healthcare. Because the campaign does not look beyond the antiquated and misogynistic HBM, it cannot succeed in inspiring the desired change in health behavior. This campaign’s failure does a disservice to women at risk for developing ovarian cancer. Approximately 15,000 ovarian cancer deaths are predicted in 2008 (1). Women at risk for the disease need to understand the importance of being aware of their symptoms and demanding care under a gynecologic oncologist. It has been shown that women who see gynecologic oncologists for the treatment of ovarian cancer are more likely to receive aggressive treatment and have better outcomes than those who are treated by general surgeons or other specialists (22). It is, therefore, very important that women receive a clear message and are provided with the knowledge, skills, and resources required to obtain the right treatment for this serious disease. The OvarianCancerAwarness.org coalition has a very important message to send to women throughout the United States but has unfortunately failed to do so effectively.

REFERENCES
1. American Cancer Society. Cancer Facts and Figures 2008. Atlanta, GA: American Cancer Society, 2008.
2. U.S. Preventive Services Task Force. Screening for Ovarian Cancer. Screening for Ovarian Cancer. Recommendations and Rationale. Rockville, MD: Agency for Healthcare Research and Quality, 2004.
3. Gynecologic Cancer Foundation. First National Consensus on Ovarian Cancer Symptoms Stresses Education for Earlier Diagnosis. Women's Cancer Network Chicago, IL: Gynecologic Cancer Foundation, 2007 http://www.wcn.org/ov_cancer_cons.html.
4. OvarianCancerAwareness.org Coalition. OvarianCancerAwareness.org Coalition, Boston, MA http://www.ovariancancerawareness.org/.
5. OvarianCancerAwareness.org Coalition, An Online Discussion on Ovarian Cancer. 26 September 2007.
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11. NetRatings Inc. Three out of four Americans have access to the internet, according to Nielsen//NetRatings: Online Populations Surges Past 200 Million Mark for the First Time: Press Release March 18, 2004.
12. OvarianCancerAwareness.org Coalition. Boston, MA: OvarianCancerAwareness.org Coalition, 2007 http://www.ovariancancerawareness.org/.
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21. American Board of Medical Specialties. The Official ABMS Directory of Board Certified Medical Specialists, 2008. St. Louis, MO: Elsevier Saunders, 2008.
22. Chan JK, et al. Influence of the gynecologic oncologist on the survival of ovarian cancer patients. Obstetrics and Gynecology 2007; 109(6):1342-50.

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