New research published in Cancer Epidemiology, Biomarkers & Prevention finds that engaging in administrative tasks to estimate costs or pay for care among a cohort of cancer patients and survivors was associated with an 18% increase in cost-related treatment delays or nonadherence. Meredith Doherty, Ph.D., LCSW, an assistant professor at the University of Pennsylvania School of Social Policy & Practice (SP2), led the study.

Navigating the U.S. health care system requires a complex set of communications between patients, health care providers, and insurance companies, Doherty said. She explained that the burden of learning about the costs of care and fixing billing errors often falls to the patients.

“It’s fairly unique to our U.S. health care system for the consumer to be responsible for acquiring the knowledge and skills needed to effectively use those goods or services and to ensure they’re of high quality,” Doherty said. “In the United States, health care is largely treated as a consumer product, so the onus is on the consumer.”

After years of hearing anecdotal evidence about patients’ frustration with the administrative complexities of the health care system, Doherty came across a study showing that U.S. health care users felt that administrative burdens significantly affected their care. Doherty sought to explore this phenomenon among cancer patients and further quantify the relationship between administrative tasks and treatment delays or nonadherence.

Doherty and colleagues used data from a cross-sectional survey performed by the nonprofit CancerCare that polled cancer patients and survivors about their engagement in payment-related administrative tasks and their experience with cost-associated treatment delays or nonadherence. Participants were asked if they never, rarely, sometimes, often, or always participated in the following activities during their cancer care:

• Administrative burdens
  • Estimated the out-of-pocket costs before agreeing to treatment
  • Appealed a denial of benefits from the insurance company
  • Found out the out-of-pocket costs before filling a prescription
  • Asked insurance company for help understanding coverage
  • Found out the out-of-pocket cost before getting a lab test or scan
• Treatment delay or nonadherence behaviors
  • Postponed or skipped doctor’s appointments
  • Postponed or skipped follow-up testing
  • Postponed or skipped blood work
  • Postponed or skipped filling prescriptions
  • Skipped doses of prescribed drugs

The 510 responses included in this study were selected to provide equal representation from major U.S. geographical regions (Northeast, Southeast, West, and Midwest). Half of the participant population was selected from patients or survivors who had breast, colorectal, lung, or prostate cancer; the other half was comprised of patients and survivors who had any other type of cancer.

Participants engaged in an average of one administrative task and one delay or nonadherence behavior at a frequency of “sometimes” or higher. After adjusting for age, race/ethnicity, education, and monthly out-of-pocket costs, participants who engaged in any administrative tasks were 18% more likely to experience any treatment delays or nonadherence than participants who did not engage in administrative tasks. Engagement in each additional task was independently associated with an increase in treatment delays or nonadherence.

The survey showed that 55% of participants “never” or “rarely” engaged in any administrative tasks. Doherty and colleagues performed another analysis to better examine the effects of increasing administrative burden on the frequency of treatment delays or nonadherence. After adjusting for age and estimated monthly out-of-pocket care costs, each unit increase of administrative burden (additional tasks or increasing frequency) was associated with a 32% higher frequency of treatment delays or nonadherence.

While age, race/ethnicity, and monthly out-of-pocket costs were more strongly associated with treatment delays or nonadherence than administrative burden, Doherty and colleagues noted that African Americans were more likely to engage in administrative tasks and experience treatment delays or nonadherence than other racial and ethnic groups.

These data suggest that administrative burden may exacerbate existing health disparities among marginalized groups, Doherty said.

“For those who do engage, there’s frustration, exhaustion, and I think a sense of alienation. If you send me a bill erroneously and can’t help me correct it, you’re showing me you don’t care about me.”

Doherty hopes this work may help spur further studies and conversations about how to begin simplifying the system. “I think we’re at a place now where we may want to quantify how much improvement in outcomes we might see if we alleviated some of these administrative burdens,” she said.

Limitations of this study include the use of a voluntary survey, which introduces the risk of selection bias and recall bias, especially among participants for whom more time passed between their cancer diagnosis and survey participation. The study did not include uninsured patients or stratify patients by insurance type, and it did not attempt to measure or account for health care literacy.

More information:
Administrative Burden Associated with Cost-Related Delays in Care in U.S. Cancer Patients, Cancer Epidemiology Biomarkers & Prevention (2023). DOI: 10.1158/1055-9965.EPI-23-0119

Journal information:
Cancer Epidemiology, Biomarkers & Prevention

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