Priorities for Rural Lymphoma Survivors: An Exploratory Study

Background: Rural cancer patients, including those with lymphoma, have unique needs and barriers to care, including access to preventive and specialized care, economic resources, and proximity to supportive services. Research is needed to thoroughly understand these needs and propose solutions to health outcome disparities in these populations.

Objective: We conducted a qualitative study with lymphoma survivors living in rural areas to: 1) determine perceived unmet needs regarding lymphoma care in rural areas and 2) examine views, understanding, and priorities for rural patients' participation in and education about therapeutic and non-therapeutic clinical research studies.

Methods: We conducted 11 individual semi-structured phone interviews in the spring of 2018 with lymphoma survivors living in rural counties in the state of Georgia. Patients were identified by a home address in counties classified as rural based on Rural/Urban Commuting Areas (RUCAs), a categorization system used in the research community to classify rural and urban areas based on census track level data. Individual interview participants were recruited from regional patient education conferences and among current research participants at a university research hospital in the state of Georgia. Interviews were recorded and transcribed verbatim. Thematic analysis was used to identify themes emerging from these data. MAXQDA 18.0.8 qualitative data analysis software was utilized to facilitate a constant-comparative coding process to identify the resulting themes.

Results: The greatest barrier to care expressed by the participants was distance. Interviewees had to frequently take time off of work and travel any time they needed to see a specialist or visit a cancer center in a larger city, often requiring several hours of travel by car. Many participants felt they were burdening their family and friends by relying on them for transportation. Rural lymphoma patients and caregivers described difficulty navigating between their local clinics and the larger cancer centers. Distance also was a barrier to attending educational events or support groups. Many participants were frustrated with their diagnosis experience at small clinics and regretted that they didn't seek the opinion of a specialist sooner. Some also felt that the team at their local clinic was not as knowledgeable about their treatment plan or its long-term effects. Although smaller, local clinics facilitated building relationships with the team and provider, there were drawbacks to relying on a local clinic, including lack of specialized providers and opportunities to participate in research. Communication between local and specialized clinics complicated the process, and participants had more difficulty contacting or seeking advice from the team at larger cancer centers. However, electing to receive treatment from specialized clinics farther away also had consequences. One solution agreed upon by nearly all of the participants was the use of technology to communicate. Participants were extremely supportive of online patient portals available at larger cancer centers which allowed them to more easily communicate with their clinical care team and helped them feel involved with their care, while educational or informative smartphone applications allowed them to access and streamline information that otherwise was not available in a rural area.

Conclusion: These findings suggest that targeted research and interventions are necessary to address the specific needs of rural lymphoma survivors. To address the disparity in health outcomes that exists in this population, health care professionals and investigators can utilize these data to engage rural survivors in their treatment decision-making. In particular, the preference in this study population for using technological innovation to communicate contributes to the body of research regarding the significance technology has and can continue to have in lymphoma care.