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Multi-organizational study aims to improve outcomes of minority children with brain and central nervous system tumors

Multi-organizational study aims to improve outcomes of minority children with brain and central nervous system tumors

Reducing the burden of disease starts with understanding the reasons behind disparities

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Written by Cancer Center on August 4, 2020

Black and Hispanic children diagnosed with brain and central nervous system (CNS) cancers have worse outcomes than their white counterparts in the United States. The reasons behind this are unclear but may include socioeconomic factors and/or limited access to quality care. Now, researchers at the University of Colorado (CU) Cancer Center and Children’s Hospital Colorado on the Anschutz Medical Campus are collaborating to better understand these disparities, as well as develop ways to reduce the burden of disease in these populations.

“It is difficult to determine why these disparities occur from looking at national cancer databases, and it also hard to know how to eliminate these disparities,” explains Adam Green, MD, CU Cancer Center member and principal investigator of the study. “We’re lucky enough to have a great deal of patient-level data through our clinical records and tumor bank at Children’s Hospital Colorado. We are planning to use these resources to figure out why differences in survival based on demographic and socioeconomic variables happen.”

Funded by the Office of Community Outreach and Engagement (COE) at the CU Cancer Center. The purpose of the COE is to identify and address cancer healthcare disparities, as well as improve outcomes in underrepresented populations in Colorado. The COE is led by Associate Director Evelinn Borrayo, PhD.

“The COE will be working with Dr. Green’s team to develop community-engagement strategies to better understand the challenges disadvantaged children face that may contribute to differences in survival such as receiving timely CNS cancer treatment,” says Borrayo. “The CU Cancer Center’s strategic goals include reducing cancer disparities in our catchment (the State of Colorado). Locally, disadvantaged populations have significantly higher incidence and mortality from various cancers, making such disparity a priority for our cancer center.”

Collaboration Against CNS Disparities

Children’s Hospital Colorado has one of the largest pediatric CNS tumor clinical and research programs in the world, including robust clinical and tumor sample databases and clinical trial programs.

“These resources ideally situate our program to develop this work further, focusing on the State of Colorado. It is only by moving from the population to the community and patient levels that we can achieve an understanding of the causes of these survival disparities and develop interventions to address them,” says Green. “To serve our patients optimally, we believe it is crucial to develop interventions to address these disparities while also studying their specific origins further so that these interventions can be further refined.”

Green and his team will use clinical records to build on current population-based analyses by adding factors such as primary language and distance away from the hospital. Additionally, they will use molecular data collected from patients’ tumor samples to help determine whether or not there are biologic differences based on race and ethnicity.

“We will look at the effect of all these variables on how widespread patients’ tumors are when they’re diagnosed, their treatment and their survival. We will analyze all these data to try to determine the source of demographic and socioeconomic disparities,” says Green. “Once we have a better understanding of the reasons behind the disparities, we will engage with the CU Cancer Center’s Office of Community Outreach and Engagement to develop two pilot interventions to mitigate these disparities.”

Improving CNS Outcomes Starts in the Community

The first intervention focuses on educating primary care providers who are more likely to diagnose children from minority, disadvantaged and rural populations. To do this, Green and his team will use an established education tool called HeadSmart that focuses on pediatric brain tumor symptoms.

“Our goal is to make sure that these patients get diagnosed and treated as soon as possible,” explains Green. “The faster that a newly diagnosed patient can get to an academic center like ours, the more likely that they will have a better outcome.”

The second interventional pilot study involves conducting qualitative interviews with disadvantaged patients and their families in the program.

“We want to determine challenges involved with treatment and, especially, enrollment in clinical trials,” says Green. “Using that information, we will try and overcome those challenges by using community, hospital, and CU Cancer Center resources. We will then assess the impact of this effort on treatment participation and clinical trial enrollment.”

With the help of multilevel community engagement, Green and his team hope to improve the outcomes of minority patients diagnosed with CNS tumors in Colorado as well as develop and refine interventions to better serve these populations.