Priorities for Rural Lymphoma Survivors: A Qualitative Study

Abstract

A qualitative study of lymphoma survivors living in rural Georgia was conducted using 12 individual semistructured telephone interviews. The travel distance was the greatest barrier to care, with other issues including communication and navigating between local clinics and larger cancer centers. The participants saw technology as an important solution and detailed their research priorities. Background: We gathered rural patient perspectives on lymphoma care and unmet needs throughout the treatment course to better understand their attitudes toward treatment and their barriers to participating in clinical research studies. Patients and Methods: We conducted 12 individual semi-structured telephone interviews in the spring of 2018 with lymphoma survivors from rural counties in Georgia. Patients were identified by a residential address in counties classified as rural according to the Rural-Urban Commuting Areas codes. Participants were recruited from regional patient education conferences and from current research participants at a university research hospital in Georgia. The interviews were recorded and transcribed verbatim. Thematic analysis and MAXQDA, version 18.0.8, were used to facilitate a constant comparative coding process during theme development. Results: The greatest barrier to care was the travel distance. The participants described difficulty navigating between local clinics and larger cancer centers. The lack of communication between the local and specialized clinics complicated the process, and participants had difficulty contacting or seeking advice from the team at the larger cancer centers. Seeking treatment from specialized clinics farther away introduced additional barriers. Most participants agreed that the use of technology was important for improved communication. Participants described lymphoma etiology, subtype-specific studies, alternative therapies, and quality of life as key research priorities. Conclusion: These findings suggest that targeted research and interventions are necessary to address the specific needs of rural patients with and survivors of lymphoma. To address the disparity in health outcomes within rural populations, healthcare professionals and investigators can use these data to engage rural patients in treatment decision-making and research planning.

Perceptions of clinical care and research among African-American patients with lymphoma

“…Despite the limitations in making comparisons across qualitative studies, our findings from two previous studies involving predominantly White patients recruited in the same healthcare environment as the current study are distinct from the findings presented in this population. In the aforementioned studies, White patients expressed broad awareness of available clinical trials and commonly described the emotional impact that their lymphoma diagnosis had on them [34,35]. Several participants in our study stated that their illness did not affect them emotionally at all.…”

“…The semi-structured interview guide was based on previous research in lymphoma populations [17,34,35], literature review, and the expertise of the researchers. Topics discussed included research experience, treatment plans, experiences with their clinical care team, and areas the participants felt researchers need to prioritize.…”

Identifying the Community-Engaged Translational Research Collaboration Experience and Health Interests of Community-Based Organizations Outside of Metropolitan Atlanta

“…Our ndings were similar to a recent study conducted among rural Georgia cancer patients. Findings indicated that respondents had not participated in research often, usually due to a lack of access to research opportunities (Chen et al, 2020). However, this study focused on priorities from an individual perspective where ours focused on involvement of individuals from an organization-based standpoint.…”

Influenza Vaccination Rates Among Patients With a History of Cancer: Analysis of the National Health Interview Survey

“…Indeed, a recent review of National Cancer Institute–designated cancer center websites showed that only 8 centers provided vaccine-related content to patients and caregivers through that platform [ 33 ]. Additionally, systems that alert and remind the many providers that care for cancer patients (primary care, oncology, surgeons, radiation oncologists, etc) about offering the vaccine may be lacking [ 34 ]. Ensuring that state-level vaccine registries are functional, capable to interphase between states, and are easily accessible to health care providers would also facilitate coordinating efforts between providers.…”

“…Several strategies have been proposed and tested to increase influenza vaccination rates in the general population including home visits, incentives/subsidies, implementation of standing orders, vaccine screening protocols, and reminders to patients and providers [ 34 , 36 , 37 ]. Implementing some of these strategies, particularly reminder systems to patients and providers, are predicted to result in vaccination rates exceeding 80% with a modest increase in cost [ 36 , 37 ].…”