The USPSTF suggested that screening mammography leads to the greatest absolute reduction in breast cancer mortality in women aged 50 to 74 years. The following were listed as potential risks from screening mammography: psychological harm, additional medical visits, imaging and biopsies in women without cancer, inconvenience from false-positive screening results, and the potential harm of unnecessary treatment and radiation exposure [5-7]. The USPSTF revised guidelines were published in the Annals of Internal Medicine in November 2009 and recommended against routine screening mammography for women aged 40–49 years, suggesting that routine screening mammography begin at age 50 and continue biennially [7]. The recommendation for biennial screening after age 50 was based on modeling data that indicated biennial rather than annual screening confers an improved benefit-risk ratio [8]. The announcement of these revised recommendations created significant public controversy [9,10], and the USPSTF, in their testimony to the Subcommittee on Health of the House Energy and Commerce Committee soon after the announcement, acknowledged that communication about the recommendations could have been better [11]. Subsequently, the USPSTF unanimously voted to clarify the language in their previous statement. On December 4, 2009, the USPSTF clarified their communication and the focus was placed on the second sentence which stated, “The decision to start regular, biennial mammography screening before age 50 years should be an individual one and should take patient context into account, including the patient’s values regarding specific benefits and harms” [5].

The revised USPSTF recommendations received the support of organizations such as the American College of Physicians [12] and the American Academy of Family Physicians [13], generally based on the notion that the revised guidelines may help decrease perceived excessive screening leading to over-diagnosis, unnecessary treatment, and potential psychological stress. Other organizations, such as the American College of Obstetrics and Gynecology, American Cancer Society, National Comprehensive Cancer Network, American College of Radiology, and the Susan G. Komen for the Cure, continue to recommend initiating annual screening mammography at age 40 [7,14-16]. The USPSTF also recommended against routine screening to avoid characterizing all women the same way and emphasized an individualized approach for women. The importance of informed decision making regarding screening mammography has been a point of agreement between supporters and critics of the revised guidelines [17,18]. The lack of available tools to aid in decision making provides a challenge to patients and practitioners seeking to make an informed decision in this context [7,10,16,19].

The revised guidelines were also subjected to significant media scrutiny and criticism in the weeks immediately following publication of the guidelines in 2009 [9,10,20]. A recent study examining media content and patient knowledge about the revised recommendations demonstrated that the majority of newspaper articles and social media posts published within the first two months of the release of the revised guidelines were unsupportive, stating that women were confused by the recommendations [20].

Despite reporting awareness of the revised guidelines, a large number of patients described low confidence in their understanding of the revised guidelines. In addition, more patients were in agreement with existing recommendations about screening mammography before the release of the revised guidelines than after the release. A large number of responders also described increased confusion following the release of the revised guidelines likely secondary to the change in recommendations, as well as news presentations and publicized disagreements among major health organizations [20]. As noted in the commentary by Woolf in JAMA, unless guideline-related challenges are resolved, there will be a lack of understanding and confusion about how and when to pursue clinical preventive services [9].

In addition to reported confusion regarding the age at which to initiate mammography as well as the frequency of screening, many of the patients also described feeling more anxious about mammography screening and about their own health status as a result of the change in screening guidelines. This is striking, particularly because a majority of the participating patients (80%) reported very little or no anxiety (i.e., state anxiety) at the time of the survey completion. These findings emphasize the need for improved communication of the role of screening mammography and its impact on a woman’s health.

A majority of the patients in the current study did not expect to change their age of initiation of mammography and frequency of screening despite the revised guidelines. Patients expecting to change their screening practice did, however, report significantly more anxiety about screening mammograms than their counterparts. It is generally expected that a family history of breast cancer will impact the willingness of patients to engage in frequent screening. In the current study, patients with a family history of breast cancer reported higher awareness of the new screening guidelines. There were, however, no significant differences between these groups with regard to frequency or number of previous mammograms, nor any significant differences with regard to current state anxiety about screening mammograms, or anxiety about health status following the release of the revised USPSTF guidelines. It is possible that patients with a family history of breast cancer have a greater knowledge and understanding of the role of screening mammograms although they too could benefit from shared decision-making tools.

This study showed that women have experienced confusion, anxiety, and lack of confidence in the current screening guidelines since the release of the revised USPSTF screening mammogram. Although causality for these findings can be multifactorial, it is not clearly known whether it was the revised USPSTF guidelines or the media portrayal of the guidelines that contributed to the increasing confusion. Other factors contributing to patient confusion may have been the variable opinions of clinicians when communicating the issue of the revised guidelines, as well as the short time interval between the release of the new recommendations and this study.

The confusion and anxiety reported by the patients in the current study highlight a pronounced need to improve the communication and presentation of information to patients. The revised guidelines emphasize the importance of individual risk assessment and desirability of shared decision making with patients, particularly with regards to mammogram screening for women 40–49 years of age. Organizations that create or change guidelines may consider simultaneously creating decision-making tools, which can be used to communicate appropriate and relevant information to improve patient understanding of guidelines, that address the issues at hand and individual needs of the patient. Decision aids used in patient education have been shown to be effective and to improve patient understanding of options and potential outcomes, and there is research available providing suggestions for guidelines and quality criteria frameworks for the development and use of patient decision aids [22]. For example, in Australia and Canada, mammography screening decision aids have already been created, and in Australia the new shared decision-making tool is currently undergoing a clinical trial [23,24].

Necessary for shared decision making is understanding personal risk, and unfortunately, conveying the concept of risk to a patient is often challenging [25]. Decision-making tools could help to reduce anxiety by providing a concise review of the risks, benefits, and limitations of screening mammograms and also help clarify important options [26].