Mammo’s Missing: Underserved & Overlooked

The U.S. Preventive Services Task Force recommends women 50 to 74 years old undergo screening mammography every two years. Other guidelines promote annual studies and push age limits to include younger and older women as well. Yet amid the din of debates about overuse, some women still remain underserved.       

“We are happy if a woman comes in even every other year,” says Bridget A. Oppong, MD, a breast surgeon and assistant medical director at the Capital Breast Cancer Center (CBCC) in Washington, D.C., a screening facility that serves minority and underserved women in the district, Virginia and Maryland that stresses annual screening as the standard of care. “Our problem is we have women who come in once and they feel, ‘I have a clean bill of health; I am done with that.’”  

Statistics from the American Cancer Society and Centers for Disease Control and Prevention paint a blurry and sometimes bleak picture for routine mammography in Hispanic and black women, two populations that CBCC targets. Overall, about 75 percent of women ages 40 and older and 80 percent between 50 and 74 years old reported in 2010 having a mammogram within the past two years. Analyses on prevalence of use by Hispanic women varied, from a high of 75.4 percent to a low of 46.5 percent. Screening for black, non-Hispanic women appeared to be a bright spot, at 78.6 percent, but a study that accounted for overreporting placed the figure at 59 percent.

Education, income and health insurance status also factor into the equation, with women with less education, less money and no insurance more likely to skip screening. In all of these underserved populations, lower use of mammography may translate into missed opportunities to diagnose cancer at an earlier stage with the potential for good outcomes.

“Minority populations, populations that I consider high risk because they may lack health access, have higher rates of presenting with more advanced cancers,” Oppong says. Black women have a lower incidence rate for breast cancer than white women, but they are more likely to die from the disease. “A lot of it is because of screening underutilization.”   

Getting personal

Expecting overlooked and underserved women to take the initiative to schedule screening mammograms may be an unrealistic approach. Researchers have identified numerous perceived barriers to screening mammography that vary by patient population and location. They include past experiences, distrust, transience, limited or no insurance, transportation and work issues, lack of child care, language deficits, fear of pain, inconvenience, inhibitions, misunderstanding or disbelief in breast cancer risks and more.

Cookie-cutter outreach likely won’t cut it, either. Kimberly K. Engelman, PhD, associate professor of preventive medicine and public health at the University of Kansas Medical School in Kansas City, is recruiting Latina and American Indian women to participate in a randomized study to test an intervention that, if successful, will improve screening rates. American Indian women have one of the lowest mammography use rates, at 63.9 percent. To effectively engage women in mammography initiatives, planners needed to design programs based on feedback from community members that recognized each group’s cultural nuances. All in all, it took 18 to 24 months to design the initiative and six months to refine and pilot test.

Make that revise, refine and pilot test. For the Latina community, Engelman’s group trained “promoters of health,” community health workers who educate women about the importance of breast cancer screening. “However, this model has not worked well with our American Indian community, so we have had to backtrack and come up with a plan,” she says. In partnership with the university’s Center for American Indian Community Health, they instead recruited and trained individuals in the American Indian community rather than community health workers.

The initiative requires representatives to meet one-on-one with Latina or American Indian women at community events. Using a computerized “implementation intentions” program in English or Spanish, they provide educational materials and walk women though screening logistics, allowing the women to think through potential setbacks that might deter them from getting an exam. At the end, women sign a contract to reinforce their commitment.

Women in the trial’s control group receive only education on general breast cancer prevention. The trial will compare screening completion rates 120 days after randomization as well as self-reported barriers.

“A person may be highly motivated to get the screen, but if she doesn’t have the tools, knowledge or the knowhow to take the steps to get screened, it likely won’t happen,” Engelman says. “The premise of this project is to help break down those particular barriers to help people better understand the exact steps it might take to get screened.”

Engelman emphasizes that it is a culturally tailored program, an approach CBCC embraced since its inception in 2008. At the D.C. facility, one Hispanic and one African-American employee provide outreach services and they are assigned as patient navigators to any screened woman with an abnormal finding.

Taking advantage of an EHR implemented in 2010, the center has been tracking its rate of follow-up for diagnostic imaging. Between January 2010 and December 2011, the rate of women (46 percent black and 37 percent Hispanic) who returned for diagnostic imaging was 91 percent, at a median interval of 40 days. Three-year data show a rate of 80 percent, which Oppong describes as “pretty good in a population where the show rate was hovering at 50 percent. Eighty percent is progress but obviously there is room for growth.”

She credits navigators for ensuring culturally sensitive care and guidance and instilling confidence and trust in patients. “That is how we get a lot of women to come back and keep in touch with us,” she explains.

Source: Medical Care 2010;50:171-1782

Facility factors

Facility as well as patient characteristics may play a role in successful follow-up of an abnormal screening result. Building on previous research that showed only half of Latina and Asian women understood from follow-up letters or calls that their mammograms had been suspicious, Leah S. Karliner, MD, a primary care physician at the University of California San Francisco, and her colleagues examined the association between non-English language and delays in follow-up. In the February 2012 issue of Medical Care, they reported that non-English speakers had longer time to follow-up compared with English speakers for exams that required immediate follow-up.

The facility with the timeliest follow-up (14 days) had the smallest proportion of non-English speakers, at 18 percent; patients who spoke Spanish and Asian languages had longer times than English speakers. In contrast, the two facilities with about 40 percent and 50 percent non-English speakers had longer overall follow-up times (25 days and 41 days) but no differences by language. The latter two used bilingual patient navigators.

“There is this interplay between systems issues and human contact and communication issues around results and follow-up,” Karliner says. “You can see that in the facility that is doing well. It is getting people in reasonably quickly, but there is a difference by language.”
She cautions that the study included only three facilities. Her research group is completing an analysis using more facilities to identify facility characteristics that deliver higher follow-up completion rates and shorter follow-up times. Resource issues, including the availability of radiologists and patient navigators, and prioritizing those resources, may be a factor, particularly for facilities that serve vulnerable populations, she says.

L. Elizabeth Goldman, MD, and members of the Breast Cancer Surveillance Consortium put facilities under the microscope in another study that examined the timeliness of follow-up to abnormal findings at mammography facilities that serve vulnerable women. Their study, published April 2013 in Managed Care,  focused on Medicare beneficiaries at 142 facilities with patient populations that included women who hadn’t finished high school, were low-income minorities or rural. They found wide variability in timeliness and rates of return.

"There are likely differences in practice patterns to account for the variability in the 2013 Medical Care article, but our study could not say what is happening in these facilities to make these differences." says Goldman, also of the University of California San Francisco.
Goldman describes this gap as a black box. The answers may include appropriate staffing, environment, tracking protocols, communication processes and quality care. As a follow-up study, Goldman and colleagues intend to examine quality measures such as accuracy of interpretations as well as timeliness. “The challenge is to apply these types of systems appropriately so there is not unnecessary overreading or recalling women when they don’t need a biopsy,” she says. “It is a kind of a balance.”

Every step of the process—getting underserved women in the door, ensuring a positive experience during and after screening and convincing them to return for diagnostic tests or routine screening—offers an opportunity to improve outcomes, the researchers agree. To succeed, facilities need to identify patient populations that may fall through the cracks, recognize challenges and design foolproof systems customized for patients.

“Just being willing to think about that issue and examine it is really important,” Karliner says.

Oppong adds the need to drill home the fundamentals. “We have to stress that mammography works by following up on [changes over time],” Oppong says. “[Women] should not go for long periods of time without getting screened.”