UNC Lineberger’s Stephanie Wheeler, PhD, MPH, and Donald Rosenstein, MD, will use the grant to connect cancer patients with potential financial support resources in Carteret, Dare, Jackson, Lenoir, and Nash counties.
The National Cancer Institute has awarded a four-year, more than $1.87 million grant to University of North Carolina Lineberger Comprehensive Cancer Center researchers to study the impact of implementing financial navigation services at five rural cancer centers in North Carolina to help patients cope with the financial burden, or financial toxicity, related to cancer care.
Building on pilot studies launched at the North Carolina Cancer Hospital, UNC Lineberger’s Stephanie Wheeler, PhD, MPH, and Donald Rosenstein, MD, will use the grant to connect cancer patients with potential financial support resources in Carteret, Dare, Jackson, Lenoir, and Nash counties.
“Our intervention addresses the financial difficulties that so many cancer patients face: How do you afford cancer treatment? How do you make sense of your insurance and understand your out-of-pocket cost responsibility?” said Wheeler, who is a professor in the UNC Gillings School of Global Public Health. “What government programs might you be eligible for, how do you get insurance if you’re uninsured, and what other assistance programs are there that you can tap into while going through cancer treatment?”
The study is an extension of an on-going investigation by UNC Lineberger researchers into the cost that cancer care places on patients through the direct costs associated with treatment, lost income or wages, the psychological burden associated with high-cost care as well as potentially harmful behavioral strategies that patients might use to cope with costs, such as skipping treatment. Collectively, researchers refer to this impact as financial toxicity.
More than 30 percent of survivors experience financial problems associated with cancer, according to a 2013 study from the National Cancer Institute and published in the journal Cancer. Other studies have shown that black women and patients in rural areas are disproportionately affected, including work conducted by Wheeler and colleagues through the U.S. Centers for Disease Control and Prevention-funded Cancer Prevention and Control Research Network and through an American Cancer Society-funded analysis of Carolina Breast Cancer Study data.
Additionally, Wheeler reported at the American Society of Clinical Oncology’s Quality Care Symposium last year on the results of a national survey of more than 1,000 women with metastatic breast cancer that was funded by Pfizer and the National Comprehensive Cancer Network. Nearly a third of these women lacked insurance, and many felt “significant” or “catastrophic” financial effects from cancer. Rosenstein and Wheeler realized that this problem extends well beyond metastatic disease and breast cancer.
The team, led by Wheeler and Rosenstein, mapped the process of applying for financial assistance, and it became clear patients needed a trained professional to help navigate these resources. The need for financial navigation also was identified as a priority by a statewide network of oncology navigators, whose role was to support cancer patients as they transitioned from active care into survivorship.
Informed by work led by researchers at the Fred Hutchinson Cancer Research Center and published in the American Journal of Managed Care, the team tested a financial navigation program for 50 patients at the North Carolina Cancer Hospital. In this pilot program, funded by the UNC Center for Health Innovation, researchers screened patients for financial risk and then had a social work-trained financial navigator work with the patient to assess their financial needs and identify potential resources to help them.
The results of the study have not yet been released, but researchers said their early data show that having a financial navigator eases patients’ anxiety and connects them to resources that help to reduce measurements of financial toxicity.
“The striking thing was that nearly everyone we screened in the cancer clinic showed signs of financial stress or risk,” Rosenstein said.
The new grant is a follow-up to that study to see if financial navigation can be disseminated to rural areas, Rosenstein said. They will be partnering with Carteret Health Care in Carteret County, Harris Regional Hospital in Jackson County, The Outer Banks Hospital in Dare County, UNC Lenoir Health Care in Lenoir County, UNC Cancer Care at Nash in Nash County, and the Patient Advocate Foundation.
“This is part of a community-based effort to identify and respond to cancer center challenges that are outside of the major metropolitan areas in North Carolina,” Rosenstein said. “This is one intervention that we will be adapting and implementing, but there could be others related to screening for cancer, symptom management, and caregiver support that can help address unmet needs throughout the state.”
Ultimately, their goal is for the intervention to improve patient’s health and cancer treatment outcomes, as well as reduce racial and geographic inequities.
“Our long-term hope is that patients will be more adherent to cancer treatment and have better outcomes than if they had discontinued or skipped treatment altogether because of cost,” Wheeler said.
The project is funded by the National Cancer Institute (1-R01-CA240092-01). The NCI is part of the National Institutes of Health. Other co-investigators include Katherine Reeder-Hayes, MD, MBA, UNC Lineberger and UNC School of Medicine, and Cleo Samuel, PhD, and Sarah Birken, PhD, UNC Lineberger and UNC Gillings School of Global Public Health.