Breast cancer screening with mammography is a highly personal health decision for women age 40 and older. There are few decision aids to help guide women about the decision to screen for breast cancer.
The Informed Medical Decisions Foundation is in the process of creating a web-based mammography decision aid for women of different ages (40-49, 50-74 and age 75 and older). The decision aid will fit nicely within our library of cancer screening tools. The program will support our mission by presenting mammography as a personal choice for each woman, while also discussing the best available evidence about how many lives are saved with regular screening. “We are trying to present the information in the most easily comprehensible way so women can use that to make their own decisions,” explains Chris Bettis, our patient perspectives and research specialist.
“The decision to screen and how often to screen is complicated, and there are different pros and cons, depending on your age,” says Cathy Finn, our senior clinical research associate and project lead on the mammography decision aid. “However, it is an excellent opportunity for women to engage in shared decision making (SDM) with their doctor.”
This topic is especially important as many providers and their patients don’t think of mammography as a choice, but as something you “must” do to protect your health. In choosing to have a mammogram, there is the risk of discomfort, false positives and overtreatment. In choosing not to have a mammogram women may be at risk for possible undetected cancers, or cancer that might be detected later and require more aggressive treatment.
In the US there is pressure from the media and advocacy groups for women 40 and older to have annual mammograms; however, doctors and medical guidelines disagree about when to start screening, and how often to screen. Some guidelines recommend women start screening at age 40, other guidelines recommend starting at age 50. There is disagreement about just how many lives are saved by annual screening, and if getting a false positive is really a downside to being vigilant about finding cancer early.
We wanted to learn what women thought about screening, so we invited women in three different age groups (40-49, 50-74 and 75+) to talk about mammography. We learned that women were mostly aware of the positives surrounding mammograms and knew less about the downsides. According to Pam Wescott, director of patient perspectives, “many women in these focus groups reported that they understood screening as their decision. In all age groups, some feel guilty and irresponsible if they don’t have their annual mammogram.” Ellen Reifler, senior research associate, patient perspectives, added, “although most women were unaware that there were any downsides to screening, they were receptive to hearing more about the reasons to screen every two years vs. every year.” It was clear from the focus groups that women could use more information about screening and a breast cancer decision aid could be useful.
Joann Elmore, MD, MPH is the medical editor for the decision aid. Joann is an expert in breast cancer screening and treatment, and she will guide development of this decision aid.
This decision aid will be available in 2014.