Abstract

Relapsed or refractory diffuse large B-cell lymphoma (R/R DLBCL) patients ineligible for transplantation face complex treatment decisions. Shared decision making (SDM) can improve patient engagement and satisfaction, despite limited data on patients' treatment preferences and values, particularly for 2nd- and 3rd-lines. To better understand R/R DLBCL treatment decision-making in patients, caregivers, and physicians. We enrolled 30 people; 14 adult patients who are in or have completed 2nd- or 3rd-line treatment in the past 5 years, 8 caregivers, and 8 oncologists. 50% of patients and 87% of caregivers were over 50 years old. 79% of patients and all caregivers were White. We also collected education, insurance, and household income data. We conducted 1-hour interviews to understand patient and caregiver involvement in treatment-related decisions, 2nd- and 3rd-line preferences, treatment satisfaction, and current SDM practices. Transcripts were coded using template analysis from 6 a priori codes. 2 interviewers double-coded 8 interviews and independently coded remaining interviews. Patients said rapid-moving care, shock of diagnosis, or failing treatment impeded individual and caregiver involvement in treatment decision-making, and thus they tended to rely on physician recommendations for treatment. All patients felt they followed a well-established standard of care, adding to low self-efficacy for SDM in 71% of patients and 38% of caregivers. While physicians believe patients should have control over their treatment, they agreed on barriers for involving patients in decision-making (i.e., limited treatment options, established standard of care). Patients found that cumulative treatment experience shaped preferences in 2nd- and 3rd-line treatment; 43% perceived higher autonomy over decision-making and had clearer expectations. 71% of patients said their oncologists shared educational materials around treatment options, but some wanted resources to address ancillary concerns. Patients found caregivers helpful in treatment-related discussions, and physicians encouraged caregiver inclusion in treatment planning. 71% of patients felt satisfied with their experience, but 21% would have liked a more individualized approach. Results suggest while 2nd-and 3rd-line R/R DLBCL treatment options may be limited, patient preferences can be incorporated into treatment planning. Opportunities for improvement include tailored educational materials for caregivers and physician tools to support integration of patients' lived experiences into clinical workflows.

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