Survey of 29 US Cancer Programs Demonstrates Compounded Financial Burden Among Rural Patients

Teresa Hagan Thomas

The increased risk of financial burden experienced by cancer patients in rural areas, due to under-insurance, travel for treatment, low socioeconomic status, and insufficient support staff in cancer clinics have been highlighted in a study by investigators and affiliates of the Cancer Prevention and Control Research Network (CPCRN). The study found that compared with urban cancer patients, rural cancer patients face greater financial hardship and have greater difficulty accessing resources to address this hardship. The investigators identified several ways by which financial distress could be addressed in rural and urban cancer patients.

Cancer is one of the most expensive medical conditions to treat, and spending has increased in recent years due in part to advances in cancer treatment, imaging, and supportive care; longer treatment durations; and more treatment combinations. Financial burden associated with cancer treatment is common, experienced in up to half of patients with cancer throughout the US. Studies have shown that financial burden – also known as financial hardship or toxicity – is associated with worse treatment adherence and health-related quality of life, and it appears to be linked to increased mortality.

Rural patients are disproportionately impacted by financial burden compared with urban patients, largely due to inadequate or lack of health insurance, greater travel expenses to reach treatment centers, and poorer access to support services that could address financial hardship associated with cancer diagnosis.

Investigators led by Victoria Petermann, BSN, RN, nursing predoctoral fellow and CPCRN co-investigator at the University of North Carolina at Chapel Hill, NC, conducted interviews with staff at 29 purposefully sampled rural and urban cancer programs with diverse sizes, resources, and infrastructure from seven CPCRN states (Iowa, Kentucky, North Carolina, Ohio, Oregon, South Carolina, and Washington). Interviews (35 in total) were conducted with staff within each program whose job involved responsibility for connecting patients with financial assistance resources about the financial resources  The study’s aim was to better understand the programs’ perceptions of financial hardship of rural versus urban cancer patients, evaluate available resources and determine how healthcare teams address financial hardship in these patients.

Only 6 of the cancer programs were based at NCI-designated cancer centers, and less than half (45%) of programs were in urban settings. Almost half (49%) the staff surveyed had received relevant training via their formal education. Among those who disclosed their job title, social workers and navigators made up the majority of participants.

Most participants in both urban and rural settings recognized the additional financial burden faced by patients from rural settings, whom they described as mainly Medicare beneficiaries with fixed incomes, which led to difficulties managing out-of-pocket costs of their cancer care. Rural patients also faced higher transportation costs due to having to travel longer distances to receive care. A smaller number of participants from urban cancer programs perceived socioeconomic concerns to be equally concerning in both rural and urban patients.

The investigators identified different categories of barriers rural patients especially faced in obtaining financial assistance, cited by the survey participants:

  1. System-level barriers
    • Lack of or under-insurance affecting eligibility for available assistance programs
    • Complexity of healthcare and insurance systems adversely impacting awareness of services patients are eligible to receive
    • Complexity of application processes for financial assistance
    • Lack of internet access and cell-phone service, limiting ability to complete web-based forms or access healthcare teams
  2. Institutional barriers
    • Less availability of financial assistance resources in rural areas
    • Fewer staff available to respond to demand for financial assistance
    • Dedicated transport unavailable or inflexible.
    • Inconsistent demand or funding resulting in inefficient services.
  3. Patient barriers
    • Reluctance to discuss financial difficulties.
    • Limited health literacy
    • Language barriers

Participants, particularly those at rural programs, cited limited staff and capacity to screen, assess, and support the financial needs of patients. Some reported using the National Comprehensive Cancer Network (NCCN) Distress Thermometer or similar tools to identify patients with financial or social needs, but many commented on the superficial assessment of financial need by these tools, limiting their usefulness.

Ms Petermann and co-investigators call for improved financial hardship screening and resources for both urban and rural cancer programs. “Efforts to bolster financial navigation should be implemented across rural and urban settings,” they declare. Especially for rural patients, they suggest the use of comprehensive screening tools such COST (COmprehensive Score for financial Toxicity) before and after treatment and making financial navigation more accessible via telehealth and sharing resources across programs. Structural barriers such as transportation and internet access must be addressed. In addition, policy interventions such as Medicaid expansion may alleviate financial hardship for many rural cancer patients, they suggest.

As financial burden continues to grow as a concern among oncology clinicians and researchers, this study adds to this body of research by highlighting the needs of rural patients. The field needs evidence-based interventions to improve financial burden experienced by patients and stave off the downstream consequences of not being able to afford cancer.