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.

Background Although the number of lymphoma survivors has increased, the needs and research priorities of survivors and their caregivers rarely are examined and addressed. Determining the needs and priorities for this population requires an assessment of the attitudes and experiences of patients and caregivers. The authors conducted a qualitative study with lymphoma survivors and their caregivers to determine care needs and research priorities. Methods In the first phase, 2 semistructured focus groups were conducted with 15 lymphoma survivors and their caregivers. In phase 2, a total of 19 individual semistructured telephone interviews were conducted with lymphoma survivors and their caregivers. In both phases, participants discussed cancer experiences and research priorities. All interviews were transcribed. MAXQDA software (version 18.0.8) was used for coding and identifying themes. Results The majority of participants felt disconnected from their clinical care team due to a lack of communication. Focus group participants noted a lack of information regarding diagnoses, treatment, research, and survivorship care. Participants coped with fear through strong social support and fostering relationships with their clinical care teams. Some caregivers felt completely ignored by clinicians. Participants expressed interest in research, but had difficulty finding relevant studies. Several interviewees desired holistic and survivorship‐oriented research and more studies regarding quality of life and mental health. Conclusions The results of the current study identified unmet needs in clinical care and patient‐oriented research, including needs for a focus on quality of life after treatment, communication between patients and the scientific community, and emotional well‐being. Health care professionals can use these data to provide care delivery, supportive services, and research that meets the needs of lymphoma survivors and their caregivers.

Background: With more than 80% of Hodgkin lymphoma patients being cured and non-Hodgkin lymphoma 10-year survival rates improving, there has been a dramatic growth in the number of lymphoma survivors. Despite these successes, survivors are often left coping with adverse outcomes resulting from cancer treatment. Research examining the needs of lymphoma survivors and their caregivers is needed as this population continues to grow. Objective: We conducted a qualitative study with lymphoma survivors and caregivers to: 1) determine perceived needs and priorities regarding lymphoma care and 2) examine views, understanding, and priorities for participation in therapeutic and non-therapeutic research studies. Methods: The qualitative study consisted of two phases: semi-structured focus groups and individual semi-structured telephone interviews. In Phase I, two semi-structured focus groups were conducted in 2017 with lymphoma survivors (n=8) and caregivers (n=7) recruited among attendees of regional and national lymphoma patient education conferences. Participants were asked to discuss their experiences, opinions, and priorities for lymphoma care and research. Results from the focus groups informed the telephone individual interview guide. In Phase II, researchers conducted 19 individual semi-structured phone interviews in the spring of 2018 with lymphoma survivors (n=17) and caregivers (n=2). Individual interviews allowed for an in-depth exploration of the themes garnered from the initial focus groups of lymphoma survivors and caregivers. 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. Focus groups and 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: Most focus group participants were frustrated by a lack of information received regarding diagnoses, treatment options, survivorship-related care, and research opportunities. Survivors and caregivers commonly felt disconnected from their clinical care team due to lack of communication, although some described trusting relationships. In particular, caregivers described their needs as being completely unaddressed in the care process. Participants expressed great interest in research, but were frustrated by the difficulty of finding research studies and results relevant to them. In Phase II, individual interviewees described their own unmet emotional needs and those of their caregivers. Several participants described their desire for more holistic and survivorship-oriented research, including studies to generate guidance for quality of life of cancer patients and survivors, alternative and non-traditional medicine, diet, and emotional or mental health. Emotionally, participants described how debilitating the fear of the unknown can be and the coping strategies they employed to combat this, including reliance on support systems, practicing gratefulness, and fostering trusting relationships with their clinical care teams. Interestingly, participants also experienced benefits from their cancer experiences, most notably strengthened relationships with their loved ones and increased spirituality or mindfulness. Conclusion: Results gleaned from focus groups and individual interviews provided insight into the unmet emotional and supportive needs of this population. Lymphoma survivors and their caregivers expressed their frustrations with their cancer experiences. These findings identified unmet patient-oriented research needs including research regarding quality of life after cancer treatment, messaging and communication between the scientific community and cancer patients, and emotional well-being. Health care professionals and investigators can utilize these data to provide meaningful information regarding care delivery, supportive services, and lymphoma research that meets the needs of lymphoma survivors and caregivers. Disclosures Flowers: Bayer: Consultancy; Denovo Biopharma: Consultancy; Gilead: Research Funding; Millennium/Takeda: Research Funding; Abbvie: Consultancy, Research Funding; Gilead: Consultancy; Janssen Pharmaceutical: Research Funding; Abbvie: Research Funding; Pharmacyclics/ Janssen: Consultancy; Pharmacyclics: Research Funding; OptumRx: Consultancy; Karyopharm: Consultancy; Genentech/Roche: Consultancy; TG Therapeutics: Research Funding; Acerta: Research Funding; Spectrum: Consultancy; BeiGene: Research Funding; Genentech/Roche: Research Funding; Celgene: Research Funding; Burroughs Wellcome Fund: Research Funding; Eastern Cooperative Oncology Group: Research Funding; National Cancer Institute: Research Funding; V Foundation: Research Funding.

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. Disclosures Flowers: TG Therapeutics: Research Funding; Pharmacyclics: Research Funding; Denovo Biopharma: Consultancy; Gilead: Research Funding; Abbvie: Research Funding; Spectrum: Consultancy; Janssen Pharmaceutical: Research Funding; Burroughs Wellcome Fund: Research Funding; Karyopharm: Consultancy; Genentech/Roche: Consultancy; Bayer: Consultancy; Genentech/Roche: Research Funding; Millennium/Takeda: Research Funding; OptumRx: Consultancy; Celgene: Research Funding; Eastern Cooperative Oncology Group: Research Funding; Abbvie: Consultancy, Research Funding; BeiGene: Research Funding; Acerta: Research Funding; Pharmacyclics/ Janssen: Consultancy; Gilead: Consultancy; National Cancer Institute: Research Funding; V Foundation: Research Funding.