Patient, caregiver, and physician preferences for treatment of relapsed or refractory diffuse large B-cell lymphoma (R/R DLBCL).

Abstract

e18710 Background: Relapsed or refractory diffuse large B-cell lymphoma (R/R DLBCL) patients ineligible for transplantation face complex, preference-sensitive treatment decisions. Shared decision making (SDM) can improve patient engagement and treatment satisfaction, despite limited data on patient preferences and values in treatment decision-making, particularly for 2nd and 3rd-lines. We conducted a primary qualitative research study to better understand R/R DLBCL treatment decision-making in patients, caregivers, and physicians. Methods: We conducted 1-hour semi-structured interviews with 14 adult R/R DLBCL patients, 8 paired caregivers, and 8 oncologists of R/R DLBCL patients to understand perceived patient and caregiver involvement in treatment-related decisions, 2nd and 3rd-line preferences and goals, treatment satisfaction, and current SDM practices. We used template analysis to code transcripts from 6 a priori codes. 2 interviewers double-coded 8 interviews to ensure interrater reliability > 75% and independently coded the remaining 22 interviews. Results: Patients said rapid-moving care and shock of diagnosis or failing treatment impeded individual and caregiver involvement in treatment decision-making, and thus relied on physician recommendations for 1st line 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. Caregivers also perceived treatment decisions as directives. While physicians believe patients should have total control over their treatment decisions, they agreed on barriers for involving patients in decision-making (i.e., limited treatment options, established standard of care, lack of patient understanding). Patients found that cumulative treatment experience shaped preferences and considerations in 2nd and 3rd-line treatment; 43% perceived higher autonomy over decision-making and had clearer expectations. 10 patients (71%) said their oncologists shared educational materials around treatment options, but some wanted resources to address ancillary concerns (e.g., mental health, fertility). Patients found caregivers helpful in enhancing their understanding of treatment-related discussions, and all physicians encouraged caregiver inclusion in treatment planning. 71% of patients felt satisfied with their treatment experience, but 21% would have liked a more individualized approach. Conclusions: Results suggest while 2nd- and 3rd-line R/R DLBCL treatment options may be limited, patient preferences and goals can be incorporated into long-term treatment planning. Opportunities for improvement include developing tailored educational materials for caregivers to establish them as trusted messengers and physician tools to support integration of patients’ lived experiences into their clinical workflow.