Preventive care is an important component of health care. New or revisions to preventive care guidelines, especially when controversial, present immense challenges to patients as well as providers as they influence the education of patients and the shared decision-making process. In this study, we found that most of the patients learned of the revised guidelines through the media. A majority of the women in the survey study reported they were confused and anxious after the release of the revised guidelines and unsure about how the changes would impact their current screening schedule.
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 . 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 .
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 . 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 . 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 .
The current study aimed to capture the perceived impact of the release of the revised USPSTF screening mammography guidelines for a subgroup of patients shortly after the information about the new guidelines were provided to the public. Because existing validated surveys reflecting issues raised by the revised USPSTF screening mammogram guidelines were not available, a new survey was designed to address the specific aims of this study. The survey post-test design makes it difficult to determine causality of the results. However, the survey questions specifically focused on impact (e.g., “The new USPSTF screening guidelines have made me feel…”) and clearly relates to this issue. Participants in this study were primarily white and associated with a single medical center that supported annual screening mammograms beginning age 40. These factors could potentially influence generalizability of our findings. In addition, local and national media reports on the topic may have introduced bias. However, the patients in this study did not receive a direct mailing from their health care providers related to breast cancer screening, and even though a majority of the participants reported learning about the new guidelines through the media, most responders denied being aware of the institution’s position on the revised guidelines. The results from this study may possibly represent the general public’s understanding and impact of the release and presentation of the revised guidelines.