Variances In Patient Experiences With Shared Decision-Making By Treatment In Patients With LBCL: Analysis Of Lymphoma Coalition’s 2024 Global Patient Survey On Lymphomas And CLL
Authors: L. Warwick, N. Bolaños, M. Lui, S. Sajkowski, K. Perry
Lymphoma Coalition (Etobicoke, Canada; Madrid, Spain)
Background
Shared decision-making (SDM) is a key aspect of patient-centred care for patients with large B-cell lymphoma (LBCL), requiring patient inclusion in care decisions and healthcare providers (HCPs) understanding preferences and needs of patients. In relapsed/refractory or high-risk LBCL, guidelines recommend stem cell transplant (SCT) or CAR-T therapy. This study investigates variances in SDM by these therapy classes.
Methods
A cross-sectional, anonymous online global survey for patients with lymphoma was deployed in 2024.
This analysis includes people with lived experience (PWLE) with LBCL, exploring questions regarding SDM including treatment goals, perceived involvement in care decisions, and patient/HCP communication.
Responses were categorised by last treatment received (CAR-T, SCT) for descriptive analysis and comparison of SDM experience.
Results
The study included 178 PWLE-LBCL (R/R or high-risk) from 23 countries, categorised by last treatment received:
CAR-T (42.1%, n=75)
SCT (57.9%, n=103)
While the CAR-T cohort was slightly older and the overall sample included more females, most patients were in remission:
CAR-T: 50.7%
SCT: 61.2%
Demographics
PWLE-CAR-T (n=75):
Female: 57.3%
Average age: 59.7 years (range 25–87)
PWLE-SCT (n=103):
Female: 68.9%
Average age: 53.5 years (range 27–76)
Patient Preferences
Patient definitely involved in care decisions as much as they want to be:
CAR-T: 62.5% | SCT: 49.5%
Patient would like SDM with doctor:
CAR-T: 59.2% | SCT: 57.0%
Patient would like to make care decisions alone:
CAR-T: 15.5% | SCT: 15.0%
Patient would like doctor to make care decisions alone:
CAR-T: 25.4% | SCT: 24.0%
Factors Very Important to Treatment Choice
Cure:
CAR-T: 78.8% | SCT: 86.8%
Improved/longer survival:
CAR-T: 75.5% | SCT: 89.2%
Bring about a remission or response:
CAR-T: 76.9% | SCT: 97.3%
Improved quality of life:
CAR-T: 66.7% | SCT: 80.6%
Fewer side effects / more tolerable side effects:
CAR-T: 35.3% | SCT: 35.1%
Duration of treatment:
CAR-T: 21.2% | SCT: 29.7%
Certainty of available treatment data/results:
CAR-T: 46.2% | SCT: 40.5%
Treatment Choice
Patient was given a therapy choice prior to most recent treatment:
CAR-T: 46.7% | SCT: 27.8%
In hindsight patient would have chosen a different treatment option due to impact on quality of life:
CAR-T: 14.6% | SCT: 29.5%
Shared Decision-Making Experience
A significant gap persists in SDM. Nearly all patients desired high involvement:
CAR-T: 100%
SCT: 97%
However, far fewer felt adequately involved:
CAR-T: 62.5%
SCT: 49.5%
Most preferred collaborating with their doctor on decisions (around 58% in both groups), emphasising the need for clinic integration of SDM.
Treatment goals differed between groups:
Remission:
SCT: 97.3% vs CAR-T: 76.9%
Improved quality of life:
SCT: 80.6% vs CAR-T: 66.7%
Clinic Behaviours Supporting SDM
CAR-T patients reported more positive interactions related to SDM:
Doctor always encourages questions:
CAR-T: 60.0% | SCT: 41.6%
Doctor ensures understanding:
CAR-T: 57.3% | SCT: 40.4%
Doctor allows expression without interruption:
CAR-T: 70.3% | SCT: 55.4%
Doctor communicates with kindness/sensitivity:
CAR-T: 79.7% | SCT: 61.0%
Doctor listens carefully:
CAR-T: 76.7% | SCT: 61.4%
Conclusions
Suboptimal SDM persists for all PWLE-LBCL and improvements are needed for all patients. While most patients desire high involvement, just over half achieve it.
Crucially, SDM is more successful in the CAR-T cohort, with higher involvement, better communication, and more treatment options.
This highlights the need for proactive, targeted SDM efforts to close the significant engagement gap in the SCT patient group.
Disclosure
The 2024 Global Patient Survey on Lymphoma & CLL was sponsored by AstraZeneca, Eli Lilly, Incyte, Kite (a Gilead Company), Johnson & Johnson Innovative Medicine, Novartis, Regeneron, F. Hoffmann-La Roche Ltd, SERB Pharmaceuticals, Sobi – Swedish Orphan Biovitrum, and Takeda Pharmaceuticals.
None of the authors benefited personally from the research.
Summary
This analysis presents findings from 178 people with lived experience of large B-cell lymphoma across 23 countries.
Key finding:
A significant gap exists between patients’ desire for involvement in treatment decisions and their actual experience, particularly among those receiving SCT.
Impact:
Patients receiving CAR-T therapy report better shared decision-making experiences, including stronger communication and greater involvement in care decisions.
Conclusion:
Strengthening shared decision-making practices, particularly for SCT patients, is essential to improving patient experience and aligning care with patient preferences.