"It really takes a village": perspectives on multi-level barriers to endometrial cancer care for rural patients

Abstract

Purpose: While it is established that rural cancer patients face multi-level barriers to high-quality treatment, the interconnections between these barriers and how they drive rural cancer disparities is not well-understood. Therefore, our objective was to better understand the interconnections between barriers to high-quality treatment faced by rural endometrial cancer (EC) patients.

Methods: We conducted semi-structured interviews with 32 clinicians and healthcare personnel from three large, geographically diverse, rural-serving, integrated healthcare systems in North Carolina. A semi-structured interview guide was developed to examine barriers to high-quality treatment for rural EC patients. Initial codes were derived from a multi-level conceptual framework of rural cancer control, and transcribed interviews were analyzed using thematic analysis.

Results: We identified three domains of interconnected barriers. First, travel distance, the most frequently noted barrier, amplified financial barriers and caregiver burden. While gynecologic oncologists could reduce travel burden by referring patients to nearby treatment facilities, provider participants expressed mixed opinions regarding the quality of care received at local facilities. Second, limited health literacy among rural patients often led to challenges in patient-provider communication, including challenges with care-related decision making and comprehension of diagnosis and treatment goals. Finally, supportive care and financial resources were often concentrated at large, urban facilities and not accessible to rural patients. However, even these large facilities lack established systems or standardized processes for supporting the most vulnerable patients.

Conclusion: To achieve equitable access to care and outcomes among EC patients, those living in rural areas may require more targeted, intensive outreach, support, and resources.

Keywords: Access to care; Endometrial cancer; High-quality care; Multi-level barriers; Rural cancer care.

Figure 1.. Interconnectivity of Multi-level Barriers for Rural Patients with Endometrial Cancer.

The shaded boxes represent different levels of the socio-ecological model and are divided into the three key domains of multi-level barriers. The arrows demonstrate that barriers were often dependent on, or connected to, one another across multiple levels and domains. For example, in Domain 2, patients with low-health literacy (a patient-level barrier) often experienced challenges with healthcare decision making and communication with providers (a provider-level barrier). Additionally, patients with low-health literacy (Domain 2) were disproportionately affected by barriers from Domain 3, such as non-standardized and inequitable pathways to accessing supportive care resources (a clinic-level barrier).