Notification Also Needs Education: Density Laws Are Only Part of the Equation, According to Breast Imagers
By Kathy Hardy
Vol. 16 No. 4 P. 20
In the five years since Connecticut enacted the first law mandating dense breast notification, 20 more state legislatures signed similar laws and more are pending. With the reintroduction of a national breast density and mammography reporting act in Congress, potentially more women in the United States will be learning the status of their breast tissue.
However, in many cases, there is still a gap in the information chain when it comes to their next steps. In some areas, the education aspect of this movement isn't keeping pace with the notification mandates. Breast imagers, on the cancer screening front lines, are in the position of complying with these laws by including breast density notifications in their reports. Many imagers wonder exactly what their role is in educating both patients and primary care physicians as to what this notification means and what steps should be taken upon receiving it.
"We're all trained to look out for women's health," says Debra Monticciolo, MD, FACR, section chief of breast imaging at Baylor Scott & White Health in Temple, Texas. "Specifically, we're trying to diagnose breast cancer as early as possible, by making an assessment and interpretation of breast imaging. As part of that process, it's important for patients to know about breast density. The better they understand what it means, the more likely they are to follow our instructions."
Texas' breast density notification law went into effect in 2011, but Monticciolo says that radiologists in the state were routinely discussing dense breast issues with their patients before the law. However, because the assessment of a woman's risk for breast cancer involves more than just having dense breasts, she believes it's best that a physician who knows the patient's complete health history initiate the "next steps" discussion with their patients.
"We send out letters and tell clinicians that their patients will be notified, but someone needs to put a diagnosis of dense breasts into the overall context of a woman's total risk for breast cancer," Monticciolo says. "That's best handled by the primary care provider. We can help and support them with that conversation."
Breast imagers in Connecticut, where dense breast notification legislation was enacted in 2009, are experiencing an open dialogue among clinicians, says Jean Weigert, MD, FACR, director of breast imaging with the Hospital of Central Connecticut. In her experience, breast imagers function as the midpoint of contact between patients and primary care physicians.
"We took the initiative in the education process," Weigert says. "We sent letters to our referring physicians when the law was enacted. Surgeons, oncologists, and primary care doctors in Connecticut have all embraced dense breast notification. There has been no pushback. Everyone is willing to talk about it and consult regarding which test is best as a follow-up. At first, some radiologists thought we were overstepping our bounds, but we're not. We're doing the right thing."
Monticciolo notes that dense breast tissue is just one of several breast cancer risk factors, which is why it's important to include primary care physicians in the decision-making process. Density, along with family history and prior incidents of cancer, should be considered in an overall discussion between the patient and her doctors.
"Women and doctors need to make the final overall decision regarding the next steps," she says.
Monticciolo, who is also chair of the ACR Quality and Safety Commission, notes a number of resources are available to doctors and patients when it comes to gaining greater knowledge about what to do once a patient is found to have dense breasts. The ACR created a brochure to inform patients about the significance of breast density, which she believes is also a good tool for clinicians.
"This is information that can be used in the office setting that benefits patients and physicians," she says.
A more "grass roots" education process occurred in Connecticut among radiologists and technologists on the front lines of breast imaging, Weigert says.
"Some patients ask for results of their screening during the imaging, so we trained our technologists to be able to explain what dense breast tissue means and what the patient's choices are in terms of additional imaging," she says.
Connecticut's first-state status as far as dense breast notification is concerned gives breast imagers there the benefit of time and patient experience under this law. Its law also mandates coverage for follow-up imaging.
"We've been able to show the data that we've gathered over four years of having dense breast notification legislation, which demonstrates the benefits of women being made aware of their breast density," Weigert says. "Our public relations department has disseminated this information to our physicians and the public to reach a wide audience. We hold lectures to educate doctors and patients alike that are well-balanced regarding the information that is presented."
Weigert also believes that education will help reduce fear among women, which is often stirred by what she calls "emotional articles" that are being published.
"People need to understand that mammography is the best modality for breast cancer screening, but it's not perfect," Weigert says. "If women decide to follow-up with ultrasound, that's OK. We need to educate women to understand that they shouldn't be afraid to go forward and find out if there is anything else going on in their breasts that the mammogram did not demonstrate."
As for other sources of education, Monticciolo also refers to websites such as BreastDensity.info, created by breast imagers and breast cancer risk specialists in California following the state's enactment of breast density notification in 2013. The California law mandates written notification to women of their tissue density, detected after routine mammography, as well as the need to discuss further screening options with their primary care physicians. The California Breast Density Information Group created this evidence-based website as a resource for doctors and women; it includes information about breast density, breast cancer risk assessment, and supplementary imaging. The site also includes educational tools such as flow charts that illustrate various clinical scenarios.
Despite resources such as these, the results of a recent study reveal that a number of doctors are still in the dark when it comes to dense breasts. University of California, Davis radiologist and staff physician Kathleen Khong, MD, is the lead author of a study aiming to evaluate the effects of California's dense breast notification legislation on primary care physicians. Study findings show that one-half of the surveyed physicians did not know the law exists and many of those who do aren't comfortable handling women's questions about what they should do after receiving a dense breast notification following their regular screening mammogram.
"The impact of the breast density legislation probably is not significant if primary care physicians are not educated or aware of it," Khong says. "We should put some emphasis on educating the primary care physicians so that when they get questions from patients, they can be comfortable in addressing the issues."
Khong says the impetus for the study was the wording of California's notification law, which says radiologists must notify patients with dense breast tissue, but if they have questions they need to discuss them with their doctors, presumably primary care physicians. She and other researchers wanted to see what impact this was having in the medical community.
"Radiologists are putting this information into their reports, but primary care physicians are dealing with the burden of getting questions from their patients," she says. "We wanted to see how comfortable primary physicians are discussing this when it's not their specialty."
One big takeaway from the study, she says, is that regardless of whether or not physicians are aware of the law, 75% of the study participants expressed interest in receiving breast density education. They're looking for advice on what to tell patients and what type of follow-up screening to recommend.
"The radiologists' role is to educate, but at the same time they need to play an active role with primary care physicians so that patients can be informed," Khong says.
Part of that education process should include which imaging modality is best for follow-up screening. This is significant, she says, but also where education is vital.
"There's nothing specific that says what the right supplemental screening imaging is when a woman is diagnosed with dense breast tissue," Khong says. "As the specialists, radiologists are the ones who are the most informed when it comes to discussing dense breasts, mammography, and breast cancer, so it's good for us to take the lead in the education process. However, if radiologists can't agree on the best next steps, how can doctors recommend follow-up imaging? It's important for clinicians to know all the imaging that's available, to discuss the pros and cons and inform their patients."
In a follow-up study, Khong says one of the questions for physicians will be what types of education would work best for them.
"No matter the verbiage, what doctors need to be educated about remains the same," she says.
Advocacy groups are also playing a role in the education process. Nancy M. Cappello, PhD, director and founder of the Connecticut-based advocacy organizations Are You Dense, Inc and Are You Dense Advocacy, Inc, speaks from the perspective of a breast cancer survivor when addressing the need for further education on the topic of dense breasts. She says there is an expectation among patients that their health care providers will present them with information about whatever medical condition they're dealing with. However, that's not always the case. Cappello says legislation is helping fill the information gap but is not a replacement for an educated conversation between patient and provider.
"In this case, our work has involved educating the patient and the general population, and doctors compose a part of the general population," Cappello says. "Doctors have asked us for more information about dense breast tissue. Sometimes we find that the patients know more than their doctors."
Taking a lead in the education process, Cappello says, are breast imaging practices where radiologists and primary care physicians include consultative conversations with their patients. Incorporating this process into the daily workflow has helped make the patient education process more efficient and meaningful.
"Some practices have personnel called imaging or breast navigators, who work with patients and referring practices and physicians throughout the breast cancer screening process," Cappello says. "They explain what dense breast tissue and other risks mean to the patient while conferring with and educating the referring doctors. This puts another helpful face to the issue of dense breast tissue."
Creating an environment where breast imaging is the focus was the goal of radiologist Lisa R. Weinstock, MD, director of Women's Digital Imaging in Ridgewood, New Jersey. A breast imaging specialist, she founded her private practice in 2004 in an effort to provide focused breast imaging care to women. Ten years later, New Jersey enacted its breast density notification law.
Weinstock, who was appointed to the New Jersey Breast Imaging Options Work Group, believes it is the radiologists' responsibility to educate women about their dense breasts.
"I like to deal directly with the patients," she says. "They're intelligent and they want to know what having dense breast tissue means for them. Clinicians need to know about what's going on, but we don't want to put more of a burden on them when it comes to educating patients."
Weinstock explains that the nuances of a dense breast diagnosis are such that it isn't always a straightforward issue. With that, she says it isn't fair to clinicians to expect them to handle patients' questions regarding next steps, including additional screening.
"You need someone with a good understanding of what mammography shows, of what ultrasound shows, and what other modalities show when dealing with dense breast tissue," Weinstock says. "It's important to include clinicians in the process, but the radiologists should suggest recommendations for the next steps."
One tool she has found valuable as she educates women about dense breasts is the images themselves.
"We have posters in our office that show women images as examples of what a dense breast looks like and how density can mask other findings," Weinstock says. "If they see it they can understand it. A picture is worth a thousand words."
As states continue to pass notification legislation, many believe that density would be better handled with a national standard. It's difficult to inform the medical community and patients as to what's best when the law addresses dense breast notification in different ways. For example, many say that some states are vague about the next steps for the patient. Monticciolo sees this variability as one unintended consequence of these dense breast notification laws.
"Breast cancer risk assessment has never been a black and white issue," she says. "They want standards to follow, but the decision-making process is more fluid. We want people to be well informed, but if we can't tell them what to do we may be causing more harm [with dense breast notification] than good. It's complicated."
Weigert agrees that the "what next" aspect of dense breast notification is a "work-in-progress," which makes it difficult to create a definitive education plan. However, she says that if there is to be a national mandate, it's important that the language in the bill strikes a balance between notifying women and giving them information about what this finding means.
— Kathy Hardy is a freelance writer based in Phoenixville, Pennsylvania. She writes primarily about women's imaging for Radiology Today.