Exploring the Needs and Priorities of Black Patients with Lymphoma: A Qualitative Study

Background: Across lymphoma subtypes, disparities have been uncovered in age of onset, stage, treatment, and outcomes by socioeconomic status, insurance status, and race. For several lymphoma subtypes, Black patients present at a mean age approximately 10 years younger than White patients and have worse survival. Racial disparities in access to care and clinical trial enrollment have been described across cancers and contribute to these differences in survival. We sought to clarify patients' perceptions of the needs and priorities for care during diagnosis, treatment, and survivorship.

Objective: We conducted qualitative research with Black lymphoma patients in order to determine their perceptions and understanding regarding treatment and research, barriers to care, and future research priorities.

Methods: Semi-structured phone interviews were conducted with 12 Black patients with lymphoma who had received treatment in Georgia. Participants were recruited from patients who were previously agreed to be contacted about research when identified through the state cancer registry and a current research participant pool at a university research hospital in Atlanta, Georgia. Interviews were recorded and transcribed verbatim. MAXQDA software (version 18.0.8) was used for coding and identifying themes and grounded theory processes were used to generate codes. Thematic analysis will be used to generate further themes and create a constant-comparative coding process.

Results: Emerging themes from this ongoing data collection include endurance, lack of information surrounding diagnosis, trust in medical staff, and willingness to participate in research. Several participants described their cancer journey as simply another hurdle to overcome. They did not consider the emotional toll of their diagnosis and instead focused on positivity, refusing to feel sorry for themselves. A lack of information during the process of care was the most significant barrier for patients. The majority of patients felt that they were not given enough information regarding their diagnosis, with some stating that they had never heard of lymphoma before they were diagnosed with it. Others felt that this lack of information continued into their treatment with some patients being unaware of their cancer status or not being informed about procedures before they occurred. This gap in information left participants feeling disconnected from their own treatment process and uninvolved in their care. Despite this, patients expressed great trust in medical staff. Nearly all participants stated that they trusted their doctor most in their clinical care team and were therefore more willing to proceed with treatments and procedures at their doctor's recommendation. Those with a weaker connection to their doctor and care team reported feeling less satisfied with their care experience. Patients were also very willing to participate in research. Most expressed interest to participate in order to help others that may be diagnosed in the future. Some stated specific factors that would deter them from enrolling in a study, with one participant referencing the Tuskegee Syphilis Study as her reason for avoiding drug trials. Participants expressed interest in a wide range of topics for future research, with several focused on the origins of lymphoma. These participants assumed that they may have been exposed to hazardous materials while serving in the military or through an environmental contaminant and wanted more knowledge in this area.

Conclusions: These preliminary findings suggest that the Black population in Georgia has specific needs that are unaddressed by current scientific and medical communities. A lack of information leaves patients feeling uninvolved with their care and potentially disconnected from their care team. This study presents the opportunity for clinicians and research personnel to collaborate with patients to develop communication tools and strategies that keep this population informed during their treatment. Clinicians and medical providers can utilize these data to improve support for this population.