Abstract
Patients with relapsed or refractory diffuse large B-cell lymphoma (R/R DLBCL) who are not eligible for transplantation face complex treatment-related decisions, many of which are preference-sensitive. Shared decision making (SDM) has the potential to improve patient experience, engagement, and treatment satisfaction; however, limited data exist on preferences for R/R DLBCL patients and how they want to be involved in their treatment decision-making, particularly with respect to 2 nd- and 3 rd-line treatment decisions. We conducted a primary qualitative research study to understand preferences and values that impact treatment decision-making among R/R DLBCL patients, their caregivers, and physicians that treat R/R DLBCL patients in the US.
Qualitative 60-minute semi-structured interviews were conducted with R/R DLBCL patients, their caregivers, and oncologists that treat R/R DLBCL patients. Patients and caregivers were recruited as pairs; physicians and patients were not linked. Patient interview questions were designed to elicit feedback on: 1) perceptions of their level of involvement in treatment decision-making, 2) 2 nd- and 3 rd-line patient preferences and goals, and 3) treatment satisfaction. Caregivers were asked about their level of involvement in treatment-related decisions and current practices around SDM. We used template analysis to code transcripts, using 6 codes decided a priori, allowing for additional codes to emerge. Two interviewers double coded 4 interviews, ensuring interrater reliability >75% and reconciled differences, subsequently independently coding the remaining 26 interviews.
We enrolled 14 R/R DLBCL patients, 8 caregivers, and 8 oncologists in this study. Overall, patients reported the shock from their diagnosis or from failing treatment constrained them from fully being involved in their treatment decisions. 71% of patients and 38% of caregivers perceived they had limited ability to be actively involved in treatment decision-making given that their treating physician had communicated that they were following a well-established standard of care. All physicians agreed that the limited 2 nd- and 3 rd-line treatment options available created limited opportunities for patients to make treatment decisions. Among 6 patients (43%), perceptions of autonomy in treatment decision-making improved as they experienced multiple lines of treatment, consistent with physician observations. 50% of patients shared that caregiver involvement was important for supplementing their understanding of 2 nd- and 3 rd-line treatment options; however, only 1 caregiver explicitly said that they had enough time to make an informed decision. Generally, physicians also said that they encourage caregivers to be included in treatment planning.
5 patients (36%) reported that their physicians did not effectively communicate the full spectrum of 1 st-line treatment outcome possibilities. As a result, they did not feel prepared for the possibility of treatment failure or needing another line of treatment. 10 patients (71%) noted that their oncologists shared educational materials with them regarding treatment options; however, 5 physicians (62%) identified lack of patient understanding or education on treatment options as a major barrier to involving patients in decision-making.
While 71% of patients felt satisfied with their treatment experience, some shared that they would have appreciated a more individualized approach. 4 patients (29%) shared that their physicians were not equipped to address ancillary health concerns (e.g., mental health) and 2 patients noted that existing resources did not address concerns for young adults (e.g., fertility).
Results suggest that while 2 nd- and 3 rd-line treatment options may be limited for R/R DLBCL patients, preferences related to patient-centered outcomes can be discussed and incorporated into the long-term treatment planning process. Opportunities for improvement include developing tailored materials outlining caregiver responsibilities throughout the care journey, as they were consistently identified as a critical component of the treatment decision-making process by both patients and physicians. Further, developing physician tools that can support integration of patients' lived experiences (e.g., social needs) into their typical workflows can minimize duplicative patient interactions.
Vukcevic: MorphoSys: Current Employment. Kurukulasuriya: MorphoSys: Current Employment, Current equity holder in publicly-traded company, Other: Support for attending meetings/travel.
