PATIENT-REPORTED EXPERIENCES WITH CANCER-RELATED FATIGUE (CRF) FOLLOWING TREATMENT WITH CAR T-CELL THERAPY (CAR-T) IN PATIENTS WITH LYMPHOMA OR CHRONIC LYMPHOCYTIC LEUKEMIA (CLL)
Authors: Marjorie Morrison, MHA¹; Shawn Sajkowski, BBA¹; Mavis Lui²; Lorna Warwick, BA³
¹Lymphoma Coalition, Etobicoke, ON, Canada; ²Lymphoma Coalition, Canada; ³Lymphoma Coalition, Etobicoke, ON, Canada
Introduction
CAR T-cell therapy has transformed treatment pathways for patients with lymphoma and chronic lymphocytic leukaemia (CLL). While clinical focus remains on acute adverse events such as cytokine release syndrome (CRS) and immune effector cell-associated neurotoxicity syndrome (ICANS), less attention has been given to patient-reported outcomes.
Cancer-related fatigue is frequently reported across oncology settings and may significantly impact quality of life. However, its role and burden in the context of CAR T-cell therapy remain underexplored.
Aim
To explore patient-reported experiences of cancer-related fatigue following CAR T-cell therapy and its impact on quality of life compared with other commonly reported adverse events.
Method
A cross-sectional, anonymous online survey was conducted between February and April 2024 to capture the lived experiences of patients with lymphoma or chronic lymphocytic leukaemia (CLL).
Respondents were asked to identify the last type of therapy they had received and to report any associated adverse events, including their perceived impact on quality of life.
The survey also explored whether these adverse events were discussed with healthcare providers, as well as the types of support or resources offered to manage them.
Results
Overall Findings
A total of 105 patients with lymphoma or chronic lymphocytic leukaemia (CLL) from 19 countries who received CAR-T therapy as their most recent treatment participated in this survey. The median age of respondents was 62 years, and 52% were female.
Cancer-related fatigue (CRF) was identified as the most frequently reported and most severe adverse event. Despite this, communication and support from healthcare providers remain limited.
Figure 1: Most Common Diagnosis
Diffuse large B-cell lymphoma
57%
Mantle cell lymphoma
11%
Prevalence of adverse events reported
Cancer-related fatigue was the most frequently reported adverse event among patients receiving CAR T-cell therapy.
Figure 2: Patients reporting adverse events (%)
CRF
[Cancer-related fatigue]
76%
CRS
[Cytokine release syndrome]
46%
ICANS
[Immune effector cell-associated neurotoxicity syndrome]
27%
Severity of Adverse Events (Moderate-Severe)
Figure 3: Patients rating severity as moderate-severe (%)
CRF
[Cancer-related fatigue]
88%
CRS
[Cytokine release syndrome]
78%
ICANS
[Immune effector cell-associated neurotoxicity syndrome]
82%
Figure 4: Patient-reported communication and support for cancer-related fatigue (%)
21% of patients reported that CRF was discussed very little or not at all with their healthcare provider
32% of patients indicated that they did not receive specific support or resources to manage CRF
Conclusions
Cancer-related fatigue is the most commonly reported adverse event among patients receiving CAR T-cell therapy, exceeding both cytokine release syndrome and immune effector cell-associated neurotoxicity syndrome in this study.
Despite its high prevalence and severity, cancer-related fatigue remains under-discussed and insufficiently addressed in clinical practice. Patients report a substantial impact on quality of life, with cancer-related fatigue having a greater impact on quality of life compared with cytokine release syndrome and immune effector cell-associated neurotoxicity syndrome.
These findings highlight the need for greater clinical attention to this outcome. Healthcare providers should proactively initiate discussions about cancer-related fatigue, incorporate routine screening, and implement appropriate management strategies. Further research is warranted to better understand the burden of cancer-related fatigue and to support its integration into clinical care pathways.
References
Data source:
Lymphoma Coalition. Global Patient Survey on Lymphomas and CLL 2024 – Internal Data.
Etobicoke, Canada: Lymphoma Coalition; 2024.
Acknowledgements
Thank you to everyone with lived experience of lymphoma and CLL that participates in Lymphoma Coalition’s research, as well as our Member patient organisations worldwide who support and guide this work.
Contact Information
For further details on the LC 2024 GPS, please scan the QR code or visit:
lymphomacoalition.org/global-patient-survey/
Please direct any queries to:
marjorie@lymphomacoalition.org
Summary
Overall Findings:
A total of 105 patients with lymphoma or chronic lymphocytic leukaemia (CLL) from 19 countries who received CAR-T therapy as their most recent treatment participated in this survey. The median age of respondents was 62 years, and 52% were female.
Key Finding:
Cancer-related fatigue demonstrates the greatest impact on quality of life among reported adverse events, compared with cytokine release syndrome and immune effector cell-associated neurotoxicity syndrome.
Key insight:
These findings highlight a gap in recognising and managing cancer-related fatigue, emphasising the need for proactive communication, screening, and supportive care.