Identifying Health Literacy Barriers, Patient Navigation Needs, and Community Resources Among Rural Cancer Patients

Background: Limited health literacy results in poor utilization of health care services and negative health outcomes among cancer patients. Approximately 33% of rural cancer patients in Wisconsin report health literacy difficulties. The Rural Oncology Literacy Enhancement Study (ROLES) is aimed at: a) Assessing the health literacy barriers and patient navigation needs among Wisconsin rural cancer patients; and b) developing and evaluating a pilot intervention to improve cancer care based on the results. Here we report the results of the first aim of the ROLES. Methods: We used a mixed (qualitative and quantitative) methods approach, including: in-depth interviews, health literacy assessments, and phone surveys with cancer patients (N=53) from 6 rural oncology clinics in Wisconsin; 6 focus groups, 5 key informant interviews, and 45 self-administered surveys on health literacy practices with staff in these clinics; and shadowing of 34 patient-provider appointments. The Chronic Care Model was used to integrate the study findings. Results: Our study uncovered multiple barriers to optimal cancer care related to the community (e.g., limited resources, cultural perceptions of care), self-management support (e.g., limited use of patient-provider communication best practices), delivery system design (e.g., insurance/financial barriers to care, suboptimal care coordination), decision support (e.g., non-systematic assessment and management of non-medical needs), and clinical information systems (e.g., limited access to previous medical records, lack of communication across multiple providers). Conclusions: Interventions are needed to incorporate universal health literacy practices, standardize the assessment and management of non-medical needs, and improve coordination across providers and practices in rural cancer clinics.