Informed and Shared Decision Making in Breast Screening

Public Perceptions of Screening

Achievement of informed decision making in mammography screening faces several challenges, not least for women themselves. There are widely held positive attitudes and often uncritical support for mammography and screening generally. A landmark 2002 survey that documented widespread public enthusiasm for cancer screening in the United States, with 87% of respondents considering routine cancer screening “almost always a good idea,” was partially repeated in a large British sample in 2012 with very similar results. Also, a 2013 systematic review of patient or public expectations of the benefits and harms of medical interventions found that participants tended to overestimate benefits and underestimate harms of a broad range of treatments and tests including breast cancer screening.

Studies employing qualitative methods such as interviews and focus groups have been useful in eliciting women’s reasoning about different aspects of screening and their own participation. Table 16.1 provides examples of women’s attitudes to mammography using selected quotations from research participants. Though there may be cultural influences on screening attitudes, many beliefs recur across socioeconomic and cultural boundaries.

As Table 16.1 shows, taking the opportunity for early detection through breast screening is perceived as a way of minimizing potential regret, whereas failure to be screened puts one at risk of a preventable death. Women acknowledge some anxiety about going for screening mammograms, awaiting their results, and having the follow-up tests that false-positive results entail. Some are concerned about the possibility of false-negative results, but many women express strong confidence in the sensitivity of mammography and emphasize the sense of reassurance gained from receiving the “all clear” ( Table 16.1 ). The reassurance of being cancer-free that a normal mammogram result provides may be a key motivator for women to undergo screening, but this reassurance is sometimes false. Moreover, publicity about screening may be partly responsible for raising breast cancer anxiety in the first place, making it questionable whether anxiety reduction can legitimately be considered a benefit of screening.

The Conventional Approach to Information Provision

The public perception of mammography as undeniably valuable is partly due to the persuasive impact of decades of screening promotion campaigns by the health sector. Public health campaigns and messages about cancer screening over many decades have largely reflected a positive view of screening widely held among public health organizations, professional associations, patient advocacy groups, academics, and clinicians. The main approach has been to deploy powerfully persuasive communication tools to convince individuals to screen, with the overall goal of maximizing screening uptake in the population. A standard “recipe” for such communication has been described as follows: induce feelings of fear and vulnerability, then offer hope by framing screening as a simple way to protect oneself. Also consistent with this screening communication approach is presenting “a lopsided view” with an emphasis on (often exaggerated) benefits and minimization of harms. Such communications have created strongly positive views of screening in the community, which in turn feed normative expectations that screening is the “right” thing to do.

This simplistic positive messaging has increasingly come under criticism in recent years. Several international reviews have pointed out that information materials produced and distributed by breast screening services and other relevant groups have overestimated benefits and underplayed harms. The direct communications women receive about breast screening, as described above, occur within a broader context of media stories about medical testing that frequently overlook harms. The heated debates that occur among researchers and health professionals do not necessarily filter through into the public sphere. It is therefore unsurprising that women in screened societies find the idea of scientific uncertainty about breast screening difficult to accept, and are skeptical about attempts to raise awareness of controversies. Nevertheless, research suggests that many women do desire better information. In a Swiss survey, 89% of respondents wanted information on limits of mammography screening and 82% wanted to know reasons why some people oppose screening.