Jonathan Hills-Dunlap, MD, MPH, assistant professor of pediatric surgery at the University of Colorado Department of Surgery, has long been interested in health care disparities, in particular how racial and socioeconomic differences affect the surgical care that children receive.
“Kids are kids,” he says. “They should be treated exactly the same no matter the color of their skin, where they were born, what language they or their parents speak, or what jobs their parents have.”
Disparities in treating deadly tumors
In a new study published in February in the Journal of Pediatrics, Hills-Dunlap looked at how those sociodemographic factors influenced the surgical management of two types of liver tumors: hepatoblastoma and hepatocellular carcinoma.
“Hepatoblastoma is the most common pediatric liver tumor in children, and the only way to cure it is with surgery — either surgical resection or liver transplantation,” he says. “If a child with hepatoblastoma does not receive surgery, they will die. Fortunately, hepatoblastoma is responsive to chemotherapy, and many children receive chemotherapy for this disease, but eventually surgery will be necessary for cure. It’s an interesting cancer for a study like this one because the outcome is a simple one — did the child receive surgery, yes or no? And if they didn’t get surgery, the assumption is that they had a poor outcome.”
Evaluating National Cancer Database data from 2004 to 2015, Hills-Dunlap found that of the 656 children who were seen for hepatoblastoma, 506 underwent surgery and 150 did not. In the final analysis, the children who did not undergo surgery were more likely to be Black — evidence, Hills-Dunlap says, that suggests race-related disparities.
In the case of hepatocellular carcinoma — a far rarer liver cancer in children as compared to adults — the data showed a similar disparity between patients with private insurance and those with Medicaid or no insurance.
Hills-Dunlap conducted similar research on disparities in surgical treatment for umbilical hernias.
“In these large database studies, insurance can be used as a surrogate for sociodemographic factors such as poverty, education level, and job status,” he says. “Hepatocellular carcinoma is a very rare liver cancer in children, but among the children who have this diagnosis, our data suggests that uninsured or underinsured children are significantly less likely to end up getting surgery.”
Reasons why and why not
The National Cancer Database data does offer some reasons why surgery may not have been performed in 201 cases within the study — either surgery was not part of the planned first-course treatment or because of contraindications due to patient risk factors — but Hills-Dunlap says there likely are other reasons for the treatment disparity, particularly when race and insurance status are factored into the equation.
“There is a growing body of literature suggesting that non-clinical factors — either patient, clinician, or hospital-level factors — may significantly influence medical decision-making, which in turn results in the disparities we are observing,” he says. “For example, there is growing evidence that suggests Black patients are distrustful of the medical system, and with good reason. It wasn’t that long ago that unethical studies such as the Tuskegee Syphilis Study were conducted among Black patients. Black patients may have negative beliefs surrounding surgical care, fatalism, and in general overall mistrust in the medical system — especially when the providers they see in the clinic are of different racial or ethnic backgrounds. Clinicians have their own implicit biases, too, and they may treat people differently as a result of these biases.”
Other issues that may keep Black patients and those on Medicaid from receiving the care they need include poor health literacy, lack of access to specialized care, and lack of adequate time off from work to take children to appointments, Hills-Dunlap says.
“Consider the scenario of an underrepresented minority or low socioeconomic status individual trying to get a clinic appointment in a sub-specialty surgical or oncology clinic. Perhaps the scheduler doesn’t set up the appointment correctly, or the patient ends up referred to the wrong clinic. Will that patient or family have the awareness or time to course correct?” he asks. “Or maybe they get to the appointment, take the day off from work, and arrive on time, but their interactions with the oncologist or the surgeon are not positive ones."
“And what if the surgeon doesn’t do a good job at recognizing this mistrust or take the additional time and effort to truly educate the family on the complex care needed for rare liver tumors?” he continues. “Maybe they don’t take the additional steps to alleviate mistrust or educate or instill confidence that they truly have the best interest of the child in mind. These patients and their families may need more than a little extra help to understand and then achieve the care we all know they deserve.”
Finding solutions
Hills-Dunlap hopes that his new paper on disparities in liver cancer treatment, along with a similar paper he published in 2019 on disparities in umbilical hernia surgery, gets other surgeons talking not just about disparities, but about ways to address them.
“This is very much a health-equity issue — the disparity exists, we’ve identified it, but how do we make sure this vulnerable, at-risk population gets the care they need?” he says. “We are told all patients should be treated equally, but what this paper and others are trying to convey is that some patients may actually need more help. We need to treat them differently, but in a positive way so that ultimately their outcomes can be the same as every other child.”
With the awareness that studies like his bring, Hills-Dunlap hopes that pediatric patients from underserved populations will be more likely to get the surgery they need in the future.
“What this paper tells me is that we still have a long way to go,” he says. “We continue to identify disparities in patient populations that we should not be finding if, in fact, all children are treated equally. We need to keep studying these disparities, and importantly need to start working toward reducing and eliminating these disparities. If we were to repeat this study in five years, I would hope that we would see a positive change, and that these disparities would no longer exist.”
