Investigators Unveil Real-World Experiences on Shared Decision-Making in R/R DLBCL


The ideal model for promoting effective shared decision-making involves tailored caregiver education, adequate time before treatment, and use of multidisciplinary support.

Improving caregiver education, allowing time for a patient to process their diagnosis before discussing treatment, and utilizing multidisciplinary support systems are critical in improving the lived experiences of patients with relapsed or refractory diffuse-large B-cell lymphoma (DLBCL), according to investigators who presented on preferences and perceptions at the 2022 Pan Pacific Lymphoma Conference.1

Results from a survey analysis revealed gaps in shared decision-making including limited treatment options in this setting, a lack of tailored materials to guide caregivers in their newfound roles, and few resources for physicians to integrate real-world experience into their workflows. Findings also showed that the shock of the diagnosis, and the short period time between diagnosis and treatment initiation, also represents barriers to shared decision-making as this overwhelming experience tends to negatively affect the quality of patient-provider discussions surrounding treatment elections.

“Real-world evidence generated from this study fills a major gap in evidence on the preferences and goals for this patient population, specifically,” study authors wrote in a poster of the data.

Additionally, the “findings from this qualitative research study suggest that there may be opportunities to further integrate aspects of patient and caregivers’ lived experiences into treatment decision-making for [relapsed or refractory] DLBLC, increase [the] use of individualized multidisciplinary support services that can support the holistic health needs of patients, [and] develop tailored educational materials for caregivers that can equip them as trusted and engaged members of the patients treatment decision-making process.”

Although shared decision-making is associated with improved patient experience, engagement, and treatment satisfaction, there are currently few resources for patients with DLBCL whose disease has relapsed. This is accentuated by the National Comprehensive Cancer Network guidelines, which recommend multiple systemic therapies for second- and third-line treatment regimens. If a patient’s disease does not response to first-line treatment, patients can undergo either an autologous or allogenic stem cell transplant, or CAR T-cell therapy, depending on their eligibility.

For patients who are not transplant eligible, available treatment options include tafasitamab-cxix (Monjuvi) plus lenalidomide (Revlimid), polatuzumab vedotin-piiq (Polivy) with or without rituximab (Rituxan) and with or without bendamustine, or gemcitabine and oxaliplatin with or without rituximab. Navigating between these choices can be overwhelming for patients and caregivers, and although literature exists regarding the real-world evidence on patient preferences for later-line therapies, most studies focus broadly on lymphoma or non-Hodgkin’s lymphoma rather than the relapsed or refractory DLBCL population specifically.

Therefore, investigators conducted a literature review to better understand the current body of evidence for treatment preferences. Using findings from the literature review, they then interviewed 14 adult patients, 8 caregivers, and 8 oncologists. All 30 interviews were transcribed.

The patients and caregivers were linked; however, no oncologists were the treating physician of any participating patient. Patients needed to either the undergoing second-line or third-line treatment or have completed it within the past 5 years. Caregivers had to be caring for patients who fit the patient inclusion criteria. Oncologists could either be community-based in a large health system, or academic setting.

Patients were queried about their attitudes and beliefs surrounding both their and their caregiver’s involvement in shared decision-making, their preferences and goals surrounding second- and third-line treatment options, and their treatment satisfaction in regard to quality of life and treatment schedules.

Caregivers were asked to share what their current practices were for shared decision-making and their attitudes or beliefs surrounding their involvement.

Most patients (71%) and 38% of caregivers shared that they felt limited in their ability to make decisions because their clinician had expressed that they were already following a well-established standard of care. Further, the shock of the diagnosis significantly affected their ability to be actively involved in treatment decision-making. Physicians echoed the sentiments of patients and caregivers in the study, noting that limited second and third line options offer limited opportunities for integrated treatment selection. In addition, 50% of patients felt that their caregivers were very important in supporting their understanding of second and third line treatment options; however, only 1 caregiver felt that had enough time between diagnosis and treatment initiation to make an informed decision.

Among clinicians, 75% responded that they routinely ask patients about support system and social needs during their initial treatment planning visit, such as transportation issues or living situations. One physician also reported having asked about specific events influencing treatment selections, such as upcoming weddings or travel. Generally, oncologists in a community-based setting were less able to provide a care team model, and therefore, as the patient’s main point of contact, felt limited in their ability to provide comprehensive care and address all the patient’s concerns.

One hundred percent of participating clinicians stated that patients should have a high degree of autonomy, yet 62% stated that a lack of patient understanding or a lack of education regarding treatment options was a major barrier in including patients in the selection process.

Patients were mixed about their specific experiences with treatment. One thing that many patients felt unprepared for was changes to treatment plans. Overall, 3 patients (21%) shared that when details of their care journey were inconsistent with what was previously communicated (ie, the route of administration), they felt overwhelmed. Four patients (29%) felt that their physicians did not address ancillary health concerns including mental health, in an adequate manner, and 2 patients shared that their care plan had been limited to the standard of care, and that other treatment options, such as novel methods to relieve treatment symptoms, were not made available to them.

Many patients (36%) also felt that their oncologist had overemphasized the efficacy of the first line therapy, leaving them unprepared for the possibility of requiring second or third line treatment. Younger patients felt that issues like fertility or major life events in their lives were not calculated into the treatment planning process.

Overall, the survey highlighted gaps which exist in the relapsed or refractory DLBCL treatment plan schema and offers direction for providers who want to provide a more integrative care delivery. Moving forward, real-world evidence studies should seek to focused on the needs and preferences of minority patients in this setting.


Vukcevic M, Yung M, Khan M, Houpt B, Schnell F. Preferences and perceptions regarding treatment decision-making for relapse or refractory diffuse large b-cell lymphoma. Presented at: 2022 Pan Pacific Lymphoma Conference East: July 18-22, 2022; Koloa, Hawaii.

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