Challenging Dogma - Fall 2009

Wednesday, December 16, 2009

The Tip Of The Iceberg. Screening for Breast Cancer- New Recommendations- A Failed Intervention. - Taiwo Obembe.

Introduction- Breast Cancer and the USPSTF

Breast cancer is the most common cause of cancer in women and the second most common cause of cancer death in women in the U.S (1) While the majority of new breast cancers are diagnosed as a result of an abnormality seen on a mammogram, a lump or change in consistency of the breast tissue can also be a warning sign of the disease (1). Approximately 31 out of every 100,000 African American women die from the disease each year compared to 27 out of every 100,000 White women.(2) Breast cancer is the number-one killer of American women age 40 to 55, with a disproportionate disease burden borne by African American women.(3). In 2005, 186,467 women and 1,764 men were diagnosed with breast cancer while 41,116 women and 375 men died from breast cancer. (4) As devastating as the consequences of breast cancer can be when not handled aggressively, the trend of incidence and mortality has been declining for the past 7 years with about a range of 1.5%-2.5% in African American women and Hispanic Women while it has remained the same in Asian/Pacific and American Indian /Alaska Native women.(5)

USPSTF (U.S. Preventive Services Task Force)

The U.S. Preventive Services Task Force (USPSTF), first convened by the U.S. Public Health Service in 1984, is a leading independent panel of nationally recognized non-federal experts in prevention and evidence-based medicine. USPSTF is made up of an independent panel of experts in primary care and prevention that systematically reviews the evidence of effectiveness and develops recommendations for clinical preventive services. The USPSTF is charged with making evidence-based recommendations on a wide range of preventive services. Task Force recommendations are intended to improve clinical practice and promote the public health. The Task Force's scope is specific: its recommendations address primary or secondary preventive services targeting conditions that represent a substantial burden in the United States and that are provided in primary care settings or available through primary care referral.(6). The USPSTF objectively weighs the risks and benefits of prevention, screening, and treatment, within and between a range of ages, while incorporating socioeconomic status and family history. Ideally an objective approach should lead to objective conclusions that should be accepted by the public. The USPSTF is therefore similar to a role model that should command a lot of trust, support and cooperation whenever they set recommendations for clinical and preventive services not only by Federal partner organizations (i.e. CDC-centre for disease control and prevention , US FDA –Food and Drug Administration and others) but also by the primary partner organizations (i.e. American Academy of Family Physicians (AAFP), American Academy of Nurse Practitioners (AANP), American Academy of Pediatrics (AAP), and others) and the population at large.

However, USPSTF just released a new set of breast cancer screening recommendations that have not been generally accepted by the parties that are all required to be in full support of its recommendations. It has only succeeded in arousing a major controversy that has led to a lot of organizations and people questioning its motives and rules of operation. Adversely, the response to the new recommendations for mammographic screening for breast cancer clearly demonstrates that the recommendations have not been well received. Today’s literature is filled with compelling arguments that current approaches towards research, programmatic evaluations, and published guidelines include social determinants of health as fundamental factors.(7)

In the previous guidelines for breast cancer (2002), the U.S. Preventive Services Task Force (USPSTF) recommended screening mammography, with or without clinical breast examination (CBE), every 1-2 years for women aged 40 and older. The new Guidelines (2009) released by the USPSTF recommend biennial screening mammography for women aged 50 to 74 years recommending against routine screening mammography in women aged 40 to 49 years.(8)
One fact is very certain - the rate of outcry and levels of disagreement and discordance amongst breast cancer organizations and the populace completely eliminates the possibility of unawareness to the advantages of early screening of breast cancer. On the contrary there is increased knowledge and willingness on the part of women to more likely wish for earlier and frequent screening opportunities. The strategy employed by the USPSTF for the dissemination of these guidelines is very deficient. If strategy is well planned and applied properly, its main consequence should lead to an adoption of the proposed innovation. However, a number of themes come into play in its implementation that are very important and that should be put into consideration including communication style and the social context. Proper framing is also important in a bid to an appropriate response especially with the glaring and disastrous consequences of a late detection of breast cancer.

Argument 1- Communication problems

While the recommendations of the USPSTF are considered to be the "gold standard" for clinical preventive services, the typical receipt of information conveyed by public authority is not well accepted.(9) The lack of emphasis on key variables such as family history and genetics, as part of their assessment was a major problem with the framework. Despite the evidence based and objective research behind the message, the information was not effectively communicated to the general public. Consequently, the media was able to step in and capitalize on the lapses fulfilling their own agenda. Programs for cancer control measures must be properly diffused and disseminated in order to effectively reach full potential. The lack of insight by the USPSTF to incorporate the current and heated debates on health care reform as part of the framework in which the new guidelines for breast cancer were made public did not enhance the chances of public acceptance for the new recommendations for breast cancer screening. The receipt of the new breast cancer screening guidelines was not only completely rejected, but it raised issues in the eyes of the public leaving many confused. Americans were left to wonder whether this was coming from the American Medical Association, or American medical consumerism. (10) In a news analysis article, published in the New York Times just days after the screening recommendations were released, a Republican Senator reflected the confusion well when she stated, “One life out of 1,904 to be saved, but the choice is not going to be yours. It’s going to be someone else that has never met you that does not know family history.”(11). The fact that major decisions pertaining to issues as important as mammography screening for breast cancer being dictated by USPSTF was clearly uncomfortable and unacceptable by her standards. The Reaction of the Senator and a greater percentage of the public can be best explained by the ‘Psychological Reactance Theory’. According to the theory, there are 4 components: Perceived Freedom, Threat to freedom, Reactance (usually emotional) and a restoration to freedom. There was an initial freedom to screen by age of 40, then suddenly with the pronouncement of the new guidelines, a lot of people felt that they were about to be deprived of this privilege and freedom leading to the clamor and the reactions. It is also evident that most people have decided that they will ignore the new recommendations and go ahead with the old.

The ability to draw the conclusions between the guidelines and the truth behind the political debates on health care was not the intention. However, a necessary link between the two was missing. The publication containing the new guidelines enforced the fact that the task force did not discount benefits or include costs in their analysis, although the average number of mammograms per woman (and false-positive results) provides some proxy of resource consumption.”(12) The framework had to provide the link to the politics and that did not occur. Nowhere was it clear that the House and Senate have agreed that when passed, the bill would establish commission to research the effectiveness of medical tests and procedures but WOULD NOT mandate that those findings be translated into clinical practice. (11) (In other words, the health care reform would actually provide flexibility for the patient’s doctor to practice as he/she saw fit.

A second contributor to the public rejection of the new breast cancer screening guidelines was the role of the media in worsening the communication problem. The poor communication with the public created an open door through which the media was able to capitalize on- seizing the communication lapse to sell news. The agenda of the media is to sell news. They cannot publish blatant lies; however, they do leave room for a lot of questions. The media was provided with the opportunity to take advantage of and exploit the present controversy in order to achieve benefits by way of financial gain and increased ratings.

In 1997, a study was conducted to explore the effect of mass media on women who had been diagnosed with cancer. The researchers concluded that there were some advantages as well as a number of disadvantages of mass media in spreading health information. Subjects concluded that mass media sources were able to portray the disease as frightening and depressing, contributing to the idea of the disease as negative and sensationalized to the public. (13)
Another public view resulting from mass media is one where the disease and screening guidelines are under the influence of government. The reaction is based upon the portrayal by the media that science is influenced by politics. A perfect representation of the confusion about policies around a disease provided through mass media is a recent quote from by a Republican Senator in response to the announcement of the guidelines. According to the article, he was quoted as stating, “This was based mainly on cost.” The truth is, he was actually completely wrong, but the media never mentioned he was the only veterinarian in the senate and may not have been the best representative of the senate to be responding to the confusion that had been created by the media in the American public. Had the public known the details, perhaps the statement would not have been so compelling. (14).

Argument 2- Lack of Involvement and Collaboration with Opinion Leaders

Diffusion of innovation is enhanced through community organization by opinion leaders. The diffusion of innovation model describes the way an idea or product enters a social system and is "adopted” by groups of people within that system. (15). Considering the recent announcement of the new breast cancer screening guidelines, not only were the guidelines lacking the framework for proper dispersion, there was another issue hindering the public’s acceptance. There are some key players in the field of cancer research and cancer organization that publicly announced their lack of support of the new guidelines. The combination of the sudden introduction of the new guidelines with the general disapproval of most cancer organizations and physicians (the “opinion leaders” in this case) leaves no room for anything other than more confusion in the public eye. The news reports that came out on the following day only added to the confusion showing a clear division between many key players.

On one hand, The American Cancer Society and the American College of Radiology both said they were maintaining their current guidelines which advise annual mammograms starting at age 40. Then The National Cancer Institute was on the fence stating, “It was re-evaluating its guidelines in light of the task force’s report”. On the other end of the spectrum, the president of the National Breast Cancer Coalition believes that, “This is our opportunity to look beyond emotions. The task force is an independent body of experts that took an objective look at the data.” Other advocacy groups, like the National Breast Cancer Coalition, Breast Cancer Action, and the National Women’s Health Network, welcomed the new guidelines as well. (16) The challenge of persuading patients and doctors to accept such standards requires a transformational shift in thinking, particularly when the disease involved is as prevalent as cancer. The support of the new guidelines by ALL of breast cancer organizations, associations, and subgroups is imperative. These groups are a source of support and information for individuals; they tie between task force and communities, and ultimately individuals together. If the organizations do not publicly support the USPSTF, the public is only going to wonder why they should.

The practical effects of the task force recommendation, under the health care reform bill, might be to increase the number of insurance policies that require a co-payment for those early tests unless a woman’s doctor intervened to say that they were needed. Unfortunately, lack of a solid framework including key topics and links to particular factors, had to be established and concisely conveyed. The fact that the task force was unable to do this left the public without a solid groundwork upon which to rapidly accept these proposed changes.

Argument 3 Loss of focus and strategy- Social, biological and cultural factors ignored

The task force neglected to address the fact that breast cancer is part of complex ecological social environment. (17) The USPSTF recommendations focused largely on non-medical and non-scientific aspects- ignoring the social and biological context associated with the disease. The main reasons of the task force’s new recommendations according to a New York Times release were the risks caused by over diagnosis anxiety; false positives test results and excess biopsies. (18). These were the major issues put into consideration during the review for the newly released guidelines.

Breast cancer is a disease with many risk factors ranging from biological to social factors. These include –
• Family history in first degree relatives,
• Age: (increased risk with age),
• Personal history of breast cancer:
• Certain breast changes (Having certain types of abnormal cells (atypical hyperplasia and lobular carcinoma in situ [LCIS]) increases the risk of breast cancer.)
• Gene changes: Changes in certain genes increase the risk of breast cancer. These genes include BRCA1, BRCA2, and others.
• Reproductive and menstrual history:
o Woman’s age at first delivery, early menarche (age<12),>55years), women on menopausal hormonal therapy with estrogen are all associated with increased risk.
• Race: Breast cancer is diagnosed more often in white women than Latina, Asian, or African American women.
• Radiation therapy to the chest: Women who had radiation therapy to the chest (including breasts) before age 30 are at an increased risk of breast cancer. This includes women treated with radiation for Hodgkin's lymphoma.
• Breast density:
• Taking DES (diethylstilbestrol): Women who took DES during pregnancy may have a slightly increased risk of breast cancer.
• Being overweight or obese after menopause: The chance of getting breast cancer after menopause is higher in women who are overweight or obese.
• Lack of physical activity: Women who are physically inactive throughout life may have an increased risk of breast cancer.
• Drinking alcohol: Studies suggest that the more alcohol a woman drinks, the greater her risk of breast cancer. (19).

Considering the myriad of risk factors associated with the development of Breast cancer compared with the factors considered by the USPSTF, it is evident that the social , biological and cultural context surrounding the recommendation of the new guidelines was completely omitted and not given due consideration. The reasons for the new guidelines were not solid as most studies found that women who had a false-positive mammogram were just as likely to undergo subsequent mammography screening as women who did not have a false-positive mammogram. Overall, these studies found that false-positive mammograms were associated with a small increase in generalized anxiety and depression during the evaluation period, which resolved quickly after the evaluation, was completed.

Over diagnosis occurs when screening identifies cancer that would not have become clinically evident during a patient’s lifetime. Small cross-sectional studies suggest that women diagnosed with DCIS experience some emotional duress such as sleeplessness and anxiety, but how long these symptoms persist or their effect on overall quality of life is not known. (20) So, why should a reputable and federally appointed advisory panel –backer of science driven medicine base new recommendations on factors that are equivocal rather than well proven scientific facts?
The manner in which the new recommendation was introduced was very brusque with no diplomacy or strategy involved in its dissemination. The Advertising theory for instance emphasizes that people are generally influenced by large promises. The promises involving 2 main components: The product and the benefits (which should be supported with appropriate and relevant images, symbols and stories. (21). The USPSTF obviously did not employ any strategy with the release of the new recommendations.


Considering the discussed flaws in the approach above, I would like to propose a community organization approach for dissemination of new breast cancer screening recommendations. The new guidelines proposed by USPSTF for breast cancer screening were not entirely wrong. However, the manner in which they presented the issue was very questionable. I would like to use the community organization approach re-address the flaws that were highlighted above. The community organization theory is a process through which community groups are helped to identify common problems, mobilize resources and develop strategies to reach collective goals. Strict definitions of community organizing assume that the community itself identifies the problems to address (not an outside agent). Community organizing projects start with the community’s priorities, rather than an externally imposed agenda and are therefore more likely to succeed.

Community organizing is consistent with an ecological perspective in that it recognizes multiple levels of a health problem. It can be integrated with Social Cognitive Theory (SCT) based strategies that take into account the dynamic between personal factors and human behavior.

The Community Organizing theory involves three models, which may overlap or be combined.
1. Locality development-(or community development) is a process oriented. With the aim of developing group identity and, it focuses on building consensus and capacity.
2. Social Planning- is task-oriented. It stresses problem solving and usually relies heavily on expert practitioners.
3. Social Action- is both process and task oriented. Its goals are to increase the community’s capacity to solve problems and to achieve concrete changes that redress social injustices.

These different approaches broadly classified as community organizing share in common several concepts that are key to achieving and measuring change. They include;
• Empowerment- that describes a social action process through which individuals and organizations, or communities gain confidence and skills to improve their quality of life.
• Community capacity that refers to characteristics of a community that allow it to identify social problems and address them(e.g. trusting neighbors, civic engagements, corporate organizations and the medical personnel)
• Participation in the organizing process that helps community members to gain leadership and problem-solving skills.
• Relevance involves activating participants to address issues that are important to them.
• Issue selection entails pulling apart a web of interrelated problems into distinct, immediate, solvable pieces.
• Critical consciousness emphasizes helping community members to identify the root causes of social problems.(22)

A. How the Intervention can be used to address the Communication problem.

The intervention can be used to address the problem of miscommunication if USPSTF started off by developing a group that shares a common identity either in the form of beliefs or personal experiences. The group would comprise of people who believe strongly that the recommendation to start breast cancer screening by age 50 carry a greater percentage of the unit. USPSTF may go further to incorporate women who have had slightly negative experiences resulting from early and unneeded mammographic screening. The members of the group with these bad experiences would help to re-in force more effectively by the time the general public are allowed to see vivid examples of people who have suffered from the adverse effects of early screening for breast cancer. The general belief and acceptance that screening after the age of 50 can only then be gradually but effectively changed as people are allowed to share the views amongst each other. The concept of ‘’community development ‘’here in tackling the communication problem experienced by USPSTF can be further re-addressed with media advocacy. Media advocacy is an essential tactic in community organizing. It involves using the mass media strategically to advance public policies. The media help to set an agenda for the public and policy makers.(23) Hence by involving the media directly, the chances left for the media to manipulate information in such a way as to best suit themselves would be reduced drastically.

B. How the intervention addresses the involvement of opinion leaders

The opinion leader is the agent who is an active media user and who interprets the meaning of media messages or content for lower-end media users. Typically the opinion leader is held in high esteem by those that accept his or her opinions. Opinion leadership tends to be subject specific, that is, a person that is an opinion leader in one field may be a follower in another field. Individual whose ideas and behavior serve as a model to others. Key opinion leaders (KOLs) are physicians who influence their peers' medical practice, including but not limited to prescribing behavior. Pharmaceutical companies generally engage key opinion leaders early in the drug development process to provide advocacy activity and key marketing feedback. Key opinion leaders generally belong to a specific area of expertise, such as oncology, cardiology, diabetes, or sometimes do specialized work in very important therapeutic areas such as Colorectal Cancer (CRC), Non Small Cell Lung Cancer (NSCLC). (22) Hence the USPSTF needed to have incorporated the involvement of some opinion leaders into the group to disseminate the message of the new breast cancer guidelines.

The doctor for instance is the first person any confused patient would probably turn to for answers regarding any breast changes and if the doctor has been incorporated into the cancer awareness group, the confusion and the rate of opposition wouldn’t have been as significant and as controversial as it is presently. Some members from the various cancer organizations i.e. American Academy of Family Physicians (AAFP), American Academy of Nurse Practitioners (AANP) American Cancer Association (ACA) and other primary partner organizations should be involved as Key opinion leaders. This would enhance some degree of uniformity and acceptance to the new guidelines after its release rather than the haphazard nature in which the primary partners responded to the present release - some emphasizing their dis-approval while others pledged their support to the new guidelines. The uniformity in agreement that was denied by the USPSTF approach would have done a better job in allaying the fears and anxiety of the public.
The opinion leaders (physicians) Key opinion leaders (i.e. ACA, AAFP etc) through a series of debates and deliberations and research would have been able to constructively reach a decisive and a more plausible outcome.

C. How the intervention may be used to address the Loss of Focus and strategy - Social, Biological and Cultural Factors.

The involvement of Physicians as opinion leaders and the involvement of Primary Partner Organizations as Key Opinion Leaders would have generally through a lot of debates, social planning and social action help to address and highlight the importance of scientific risk factors mentioned above as the key issues for consideration in setting new recommendations rather that anxiety, false positives, pain and increase biopsies. Highlighting the biological, genetic(BRCA1, BRCA2) , social( i.e. diet), familial risk factors as reasons for the new recommendations would also be very relevant as to convincing the public of the awareness to the scientific basis underlying development and predisposition to breast cancer. Incorporating a good, appropriate advertising program would help to further re-in force and drive home the intended messages of change.


Breast cancer is a disease that has adversely affected the lives of women in the USA and around the world. There is an increased need to control and check the incidence and mortality associated with the late detection of breast cancer. However it is also important to weigh the benefits of early detection with the risks of over-diagnosis, and radiation. The USPSTF has been very systematic and conscientious in carrying out its duties. The approach however in which some of its decisions are implemented would require following appropriate and applicable interventions i.e. community organizing approach in order that their decisions may be well accepted by the groups/parties involved.


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