For most women, turning 40 brings an age-related preventative care dilemma: when, and how often, to get a mammogram to screen for breast cancer.
Luckily, their doctors can advise them by drawing on recommendations from national organizations and ample research. But for women with Down syndrome—or other chronic medical conditions, for that matter—no such guideposts exist.
Oguzhan Alagoz, a professor of industrial and systems engineering at the University of Wisconsin-Madison, hopes to provide physicians, patients and caregivers with the data to make informed decisions.
In a new paper in the Journal of General Internal Medicine, Alagoz and collaborators used mathematical modeling to elucidate the potential benefits and harms of possible mammography screening strategies for women with Down syndrome.
“I’m hoping this paper will at least start a discussion. For these chronic conditions, modeling tells you that you have to do something differently,” says Alagoz, who has been examining questions related to breast cancer for more than a decade. “You can’t just do these one-size-fits-all blanket recommendations.”
Alagoz, who led development of the University of Wisconsin Breast Cancer Epidemiology Simulation Model, is part of a National Cancer Institute-backed network of researchers employing statistical modeling to hone cancer interventions and inform policies.
Previous studies have shown women with Down syndrome have a substantially lower risk of developing breast cancer compared to the population at large. But as their average life expectancy has dramatically increased to nearly 60 over the past three decades, aging-related questions such as mammography screening guidelines have come to light.
Screenings possess the obvious benefit of detecting cancer early and saving lives. But there are also potential drawbacks: for example, false positives that can lead to unnecessary biopsies. And for women with Down syndrome, who experience anxiety disorders and other mental health conditions at a higher rate, undergoing a mammogram can be particularly unsettling. Biopsies can require general anesthesia.
“Cancer screening is a bigger deal for these women,” says Alagoz.
For their study, Alagoz and graduate student researchers Ali Hajjar and Mehmet Ali Ergun (MS ’14, PhD ’17) ran a variety of mammography screening protocols through the UW model and another from Erasmus Medical Center in Rotterdam, Netherlands. While no single strategy yielded a harm-benefit ratio for women with Down syndrome that was on par with that of the general population, a one-time screening at age 50 produced the best result.
But Alagoz is keen to stress his findings don’t represent a prescriptive recommendation. He sees his role as merely to supply tailored information that will help clinicians and patients make personal decisions.
Now he’s interested in analyzing how screening guidelines function for people with more widespread chronic diseases, such as Type 2 diabetes.
“I feel like as we have more and more chronic conditions and at this age of technology, we should be able to do a better job,” he says. “This is where I think engineering is an amazing approach, because we have the ability to come up with more personalized, data-based, evidence-based recommendations that are more tailored to people.”
Other authors on the paper include Sarocha Chootipongchaivat, Nicolien van Ravesteyn and Harry J. de Koning at Erasmus Medical Center in Rotterdam, Netherlands; Jennifer Yeh at Boston Children’s Hospital and Harvard Medical School; Brian Chicoine at the Advocate Medical Group Adult Down Syndrome Center in Park Ridge, Illinois; and Barry Martin at the University of Colorado Anschutz Medical Campus in Aurora, Colorado.