To our knowledge, this is the first examination of women’s awareness of and knowledge about the changes in USPSTF recommendations for breast cancer screening; one recently published report assessed degree of attention paid to changes but did not directly assess whether respondents were aware that changes had been made [22
]. Given that the data reported here were collected one year following the release of the USPSTF recommendations, the findings represent an important initial benchmark for women’s knowledge – and gaps in knowledge – of breast cancer screening recommendations, which may anticipate the initial public health impact of these adjustments. Indeed, enough time had passed (14 months) to allow for average-risk women to have developed some knowledge concerning the new recommendations, and to have engaged in potential conversations with their physicians about whether to undergo breast cancer screening. Although a cross-sectional assessment of recommendation awareness must of necessity be conducted at a given time point after the recommendation release, in the context of screening 12–14 months post recommendation is a reasonable time point – it is sufficiently far from the recommendation release to allow individuals to see media coverage, speak with friends and family, or have conversations with a healthcare provider. In the context of screening behavior, health care provider conversations are a known influence on screening [29
], so setting a data collection timepoint that allows for such conversations is important. In the US, conversations with primary care providers often happen at an annual exam, either by a general practitioner or a gynecologist. Thus, selecting a time point one year after recommendation release increases the likelihood of at least one provider visit having occurred, in addition to allowing time for media exposure and other conversations.
We found levels of awareness of USPSTF recommendations for breast cancer screening in the moderate range, with awareness differing by age group. Half (51%) of women aged 40 to 49 were aware that breast cancer screening recommendations had changed; 33% of women aged 50 and over were aware. Certainly the particular relevance of the recommendations for women in the younger age group may have enhanced the salience of this new information for these women.
The context surrounding the recommendation changes should be noted. The USPSTF is only one of several professional organizations which makes recommendations about screening frequencies. Other prominent professional organizations (e.g., the American Cancer Society) did not change recommendations. As noted in the introduction, there was widespread controversy and publicity about the changes and the disagreements across professional organizations. On the one hand, the differences across professional organizations might account for the low levels of awareness (e.g., if a woman uses another professional organization to look for screening information or is cared for by a provider who follows another organization’s recommendations). On the other hand, the widespread publicity generated because of the context of controversy and disagreement would lead one to expect higher levels of awareness given the media coverage.
Higher education level and higher income were both associated with increased awareness of the recommendation changes in univariate analyses (and for income, also in multivariate analyses). These important socioeconomic predictors of awareness (higher educational attainment and income) are in line with the “knowledge gap hypothesis,” which proposes that information disseminated by mass media is acquired by those at higher socioeconomic status at a faster rate as compared to those of lower socioeconomic status. Given this, that gaps in knowledge acquisition tend to increase over time, and are particularly dramatic in the context of new innovations [31
]. Differential access to information about cancer prevention, early detection, and treatment options has been proposed as an important factor that perpetuates cancer disparities [34
This is highly relevant in the context of cancer prevention and control for those at increased risk as well as in the general population, where rapidly burgeoning knowledge of cancer risk factors, prevention strategies, early detection recommendations, and treatment options require concomitant knowledge transfer through multiple communication channels. Uptake of mammography among women in underserved populations, especially among individuals with limited health literacy, has never reached the high rates achieved with more advantaged women [18
]. However, it is important to note that this study was not designed nor powered to test the knowledge gap hypothesis.
Despite moderate levels of awareness of the changes in recommendations among these women, their more concrete knowledge of the recommendations was relatively low. We surveyed women concerning their knowledge of how recommendations for breast cancer screening had changed. Only 12% of women surveyed could accurately report both the age and frequency change. For starting age, after “don’t know,” the most frequently endorsed option was “start mammography later,” with 20% endorsing this response. For frequency, after “don’t know,” the most frequently endorsed option was, ‘less frequent,” with 19% endorsing this response. These findings reflect comprehension of the general gist of the new recommendations among sizable minorities of these women, yet low levels of specific knowledge of the new recommendations. This low level of knowledge is consistent with the findings of other work examining responses to the recommendations [22
It is relatively unsurprising that women’s knowledge of the recommendations is vague considering the fact that women predominantly heard about the new recommendations from the media (81%) rather than from their physicians (5%). These findings highlight the limits of media exposure and an important opportunity for personalized discussion of breast cancer screening benefits and drawbacks in the medical setting. There is an important research priority to prepare healthcare providers to address the challenges of these discussions with their patients. Discussions with women aged 40–50 will shift to an emphasis on the benefits and drawbacks of mammography, based on the preferences of individual patients [35
]; discussions with women over age 50 will likely need to cover the rationale for recommended screening every two, rather than one, year. In all cases, these discussions will necessarily go beyond risks and benefits of mammography as they may be emotionally complex, and need to address cognitions and affect about mammography, as well as breast cancer more specifically. The impact of the USPSTF recommendations appears to be relatively slight. We found no differences in whether women received a recommendation to complete a mammogram in the past year – across both age groups, 63% of women received such a recommendation during the time period December 2009 to December 2010.
These sources of knowledge are also interesting in light of the nature of the recommendation process. The USPSTF’s charge is to serve as an expert panel to make recommendations about service effectiveness based on the scientific evidence. The mission of the USPSTF does not extend to public health communication and education to the lay public about guidelines and those guidelines changes. Thus, the USPSTF’s recommendations are disseminated to the public by others, most immediately the mass media.
In our survey only 25% of those who were aware that changes had been made to recommendations reported any discussions with a healthcare provider about the changes to recommendations. Given that the new guidelines encourage individual decision-making in consultation with a health care provider, strategies to increase such mammography discussions would address an important public health need. This will be particularly important for those under the age of 50. One possible explanation for the low levels of provider discussions is that an unknown portion of providers may be basing their mammography advice on recommendations of different professional organizations whose recommendations did not change (e.g., the American Cancer Society [36
] or are guided by individual beliefs about mammography effectiveness [37
]. Ultimately, the question of health care provider beliefs about the recommendation changes and on which guidelines they base their clinical decisions is an empirical question. Regardless, the very low rate of provider discussion given the large degree of media coverage, as well as the fact that most women reported learning about the changes from media sources, indicates untapped opportunities to educate and encourage healthcare providers about the new recommendations, as well as methods for providers to engage their female patients in discussions that allow the patients to make personally appropriate decisions about whether to undergo breast cancer screening. In fact, such discussions may be increasingly necessary for public health practice across many spheres.
Given the enhanced cultural acceptance of disclosure and discussion of breast cancer diagnosis and treatment over the past 20 years, we also examined whether social network variables related to awareness of the changes in UPSTF breast cancer screening recommendations. Indeed, women who knew someone diagnosed with breast cancer or someone who had received a false positive finding on a mammogram were more aware of the new breast cancer screening recommendations. While our results are cross-sectional, and thus we cannot infer cause and effect, it may be that the salience of breast cancer to these women enhanced their information-seeking regarding breast cancer screening, where they were more impacted by media reports concerning mammography in general. Interestingly, most women surveyed believed that the new breast cancer screening recommendations were ‘bad’ or ‘very bad’ (66%), revealing their important concerns about the recommendations, as well as the media framing of the event, which emphasized the recommendations’ potential negative ramifications. Interestingly, awareness of changes in USPSTF breast cancer screening recommendations was not related to racial/ethnic minority status, whether women had a regular healthcare provider, insurance status, or geographical location. More research is needed with nationally representative samples in order to confirm these findings.
Finally, we found that those women who were aware of the changes in recommendations generally had negative attitudes about those changes, and that attitudes were more negative for those women who had accurate knowledge about the changes. In light of the fact that knowledge of the changes largely came from media sources, this finding may reflect a social amplification effect. Social amplification through media messages can shape the construction of an issue, and ultimately magnify and enlarge the most negative, emotional or threatening elements, resulting in high levels of public concern [38
]. Our findings likely reflect media framing of the recommendation change as one of rationing care, or reducing younger women’s access to mammography. This framing and the resultant impact on attitudes and feelings concerning mammography may be reflected in women’s discussions with their physicians regarding mammography in the coming years. Physicians may want to prepare themselves for this with both accurate information and tools to help them address potentially high levels of affect regarding mammography screening and breast cancer worries. The relation of accuracy to attitudes may reflect the fact that accurate knowledge of the changes means that women were aware that the changes reduced the frequency and increased the age of screening. Previous work has shown that beliefs about mammography occur most strongly for women impacted by the changes [40
]. Women with accurate knowledge knew the impact the changes might reduce their screening frequency, which might account for the more negative attitudes.
There are important limitations of the current research. First, while our sample was diverse on some demographic characteristics, as it was evenly distributed over geographical locations in the United States, and broadly inclusive of different income levels and educational attainment, and representative of different health care provider statuses, the sample was primarily Caucasian and insured, and had higher income and education than the general population. It should be noted that these sample characteristics likely mean that our finding of substantial lack of awareness is an underestimate of the true magnitude of the situation – given the relation of income and education to awareness, it is likely that the general population was less aware of the guidelines changes than is represented by our sample. Future work with larger, national probability sampling will be critical to identify more precise estimates of the impact of the USPSTF breast cancer screening recommendations across diverse elements of the United States population.
Second, our relatively low response rate (36%) may limit our ability to generalize to the overall population; it is possible that our respondents were more knowledgeable and/or motivated than the population at large. While response rates to land-line telephone surveys have been much lower in recent years overall [41
], recent analyses suggest that low response rates do not bias estimates of population characteristics [42
]. However, it is conceivable that the sample we collected was more motivated and/or knowledgeable than the general population. If this is the case, it is likely that general population levels of awareness and knowledge of the new breast cancer screening recommendations are likely even lower than what we reported here.
Finally, given that information about innovations tends to diffuse through the population over time [44
], it is important to note that the data presented here represent awareness at one time point (one year following the guidelines presentation); presumably surveys conducted longer after the release of new recommendations would show higher rates of awareness.