As survival rates for other cancers have improved over the years, pancreatic cancer remains a difficult and deadly diagnosis.
While it is a rare cancer, the five-year survival rate is only 9%, and only about 20% of patients are eligible for surgical treatment.
Despite poor outcomes, researchers at the Morgridge Institute for Research and UW-Madison want to ensure that pancreatic cancer treatment options are accessible to all — regardless of race, ethnicity, or insurance status — so that patients can make the most informed decisions regarding their care.
Andrea Schiefelbein, assistant director of operations for the Skala Lab, is leading the project investigating disparities in pancreatic cancer care.
Along with Morgridge Investigator Melissa Skala, the collaborative project includes oncologist Noelle LoConte, surgical oncologist Sharon Weber, sociologist John Eason, and their teams at UW-Madison.
“We submitted a proposal to look into disparities between rural patients and urban patients in Wisconsin,” says Schiefelbein, “and we were lucky enough to actually get funded from two sources.”
While waiting for the funding decision from the National Institutes of Health, the group also received funding from the UW Carbone Cancer Center Pancreas Cancer Task Force, which supports pilot research projects at the university.
“By the time the NIH funding actually came around, we already had several months-worth of the project under our belts,” says Schiefelbein. “We were able to get jump-started…because of that very active advocacy group made of survivors, family members, and friends of people who have had pancreatic cancer.”
With funding from both these sources, the research group is looking at equity of pancreatic cancer care at both the statewide and the local (UW Health) level.
Additionally, there are two aspects to the research —basic science/biology and public health.
The Skala Lab is receiving surgical specimens from pancreatic cancer surgeries and treating them with different chemotherapies to monitor metabolic changes. Schiefelbein says the goal is to see if the response to treatment correlates at all with whether the patient lives in a rural or urban area.
“There’s some research that shows that rural patients (for some cancers), are diagnosed at a later stage,” she says. “So they may not respond to chemotherapy as well, and that could be leading to shorter overall survival.”
Currently, the lab is still collecting data, as the COVID-19 pandemic has stalled the processing at the biobanks that provide the samples. But Schiefelbein hopes they can continue that work by the middle of next year.
The pandemic hasn’t stopped the project altogether, as the team has been actively analyzing the public health data.
“The pandemic has actually removed some of the barriers to meeting in person by just being able to do everything online,” says Schiefelbein. “We’ve been meeting pretty much every other week since April, which has been great.”
The researchers are using data from the Wisconsin Cancer Reporting System, a statewide database that includes 8,416 pancreatic cancer patients diagnosed between 2004 and 2017; and the UW – Health Pancreatic Cancer Registry, which includes data on 1,569 patients who were diagnosed between 2004 and 2016.
“So the idea with the data that we’re abstracting right from the health records is that we can get really specific social data,” Schiefelbein says. “We can get a lot more variables to give a more robust picture of the patient to then try to see what patient characteristics are associated with our outcomes.”
“From a race and ethnicity perspective, there are a lot of differences. And that was really depressing and tough to see in the data.”Andrea Schiefelbein
At the state-level, they focused on patient race, ethnicity, sex, location, and insurance coverage, while the local UW data also includes information on several co-morbidities and risk factors—the patient’s body mass index, smoking and alcohol intake, diabetes status, or whether or not they’ve had other cancers.
“The good news is that in Wisconsin, rural versus urban residence does not seem to be associated with any difference in outcomes,” says Schiefelbein. “So that’s great for the study—it’s great for Wisconsin.”
She says this is likely due to the fact that Wisconsin has pretty good healthcare coverage overall compared to some other states. But the rural/urban disparity is only one angle.
“From a race and ethnicity perspective, there are a lot of differences. And that was really depressing and tough to see in the data,” Schiefelbein adds. The researchers also noted disparities based on sex, age, and insurance status.
They found that Non-Hispanic Black and Non-Hispanic Asian patients, in addition to female patients were less likely to receive treatment compared to white and male patients.
Additionally, patients with Medicaid or Medicare had lower odds of receiving treatment, while uninsured patients had the lowest odds when compared with patients who had private insurance.
“Those are things that make sense from a society perspective,” says Schiefelbein. “But now we also know that it’s happening at UW, it’s not just this abstract thing that happens in cancer care.”
Schiefelbein says that it is the responsibility of organizations to understand these disparities and work toward mitigating inequitable access to treatment. There should also be further research on the contribution of systemic bias toward race and ethnicity in healthcare.
She adds: “The most actionable level is for healthcare organizations to know that these differences are happening, and then put staff towards working with the patients who might be at risk of some of these poorer outcomes.”