Understanding the Patient Perspective on Treatment Preferences for Follicular Lymphoma
Authors: Tsang Mazie , Durani Urshila , Day Jonathan R , Larson Melissa C. , Holets Matthew , Yost Kathleen J , Cohen Jonathon B. , Friedberg Jonathan W. , Lossos Izidore S. , Martin Peter , Kahl Brad S. , Habermann Thomas M. , Nastoupil Loretta , Cerhan James R. , Flowers Christopher R. , Link Brian K. , Casulo Carla , Maurer Matthew J. 
Published: December 2024

Background: Due to recent advances, patients with follicular lymphoma (FL) have multiple treatment options with high response rates and durability. However, there is a gap in understanding how patient preferences influence treatment selection. To close this gap, we conducted a qualitative study using focus groups of adults with FL to understand their knowledge of treatment options, priorities, and decision-making process. We designed this study to inform the content of a planned discrete choice experiment in a larger population of patients with FL to better understand patient preferences and trade-offs around treatment delivery, side effects, outcomes, and quality of life.
Methods: We conducted focus groups lasting 60-90 minutes, each with 3-5 participants recruited from the Lymphoma Epidemiology of Outcomes (LEO) Cohort Study. The LEO Cohort Study is a multi-institutional prospective cohort study of newly diagnosed adults with non-Hodgkin lymphoma from July 2015 to present. Each focus group was co-led by two investigators (U.D. and M.T.) and conducted using Zoom video technology. Participants were asked to comment on their understanding about FL and available treatments, their ideal treatment, their decision-making process about prior therapies, and quality of life and side effects associated with treatment. We performed exploratory content analysis of participant understanding of FL and their treatment preferences. We will continue to conduct focus groups until we reach thematic saturation, which we anticipate will occur with one additional focus group. Themes from all focus groups were identified and agreed upon by both investigators (U.D. and M.T.) and were verified by additional investigators (J.D., M.L, M.H., B.K.L, C.C., M.M.).
Results: To date, we conducted five focus groups with a total of N=21 participants (median age 60 [range 41-88], 66.7% female, 71.4% non-Hispanic White, 14.3% Hispanic, 9.5% Asian, 4.8% Black/Hispanic). We identified the following themes and representative quotes:
1) Holistic approach:Participants wanted their oncologists to view their care from a holistic perspective, discussing their individual priorities and options that would accommodate their fitness routine and ability to work.
“[I wish] if doctors can consider not just the physical choices, but also the mental and emotional choices as well, the holistic person.” - Participant 13
“There's zero chance I can go back to working in the type of career where other people rely on me for things. I can't keep things straight.” - Participant 16
2) Ideal treatment:An ideal treatment would limit impact on fatigue, cognitive function, and have minimal toxicity to preserve quality of life and an active lifestyle.
“I would say something that has minimal impact on daily life would be ideal and something that would make you feel better.” - Participant 6
3) Shared decision-making: Participants wanted to be better informed about available treatment options and often utilized second opinions to inform their decisions.
“It helped to get the second opinion versus not. It would've been a completely different set of events.” - Participant 17
4) Treatment burden:Financial impact and effort required by patients to receive care (e.g., travel, number of office visits, and duration of therapy) were key factors in patient decision-making.
“Part of my quality of life went down because I had to fight with my insurance company consistently, and we pay a lot of money.” - Participant 11
“Really explain the time options and calendarize the treatment and be more specific about the amount of time that you're going to spend at the hospital and the process.” - Participant 20
5) Representation: Minority participants raised concerns about not knowing if the available treatment data pertained to them.
“[My end-goal would be] having an understanding of how the treatment is going to be for minority people. Many times the treatments are tested, they are not tested for minorities.” - Participant 21
Conclusions: The patient perspective is critical for treatment decision-making and education. People living with FL expressed a desire for a holistic and individualized approach to treatment decision-making that incorporated their lifestyle, minimized side effects, and limited overall treatment burden. These focus groups identified emerging themes that warrant further investigation for survivors with FL.