OBJECTIVES: The curative potential of chimeric antigen receptor T-cell (CAR T) therapy has dramatically altered the treatment landscape for relapsed and refractory hematologic malignancies. Currently, there is a dearth of research on the health-related quality of life (HRQoL) experiences of patients treated with CAR T therapy. The purpose of this qualitative study was to identify and understand the key domains of HRQoL for diffuse large B-cell lymphoma (DLBCL) patients treated with CAR T therapy.

METHODS: A targeted literature review was conducted to identify domains of common patient-reported outcome measures (PROs) used in DLBCL clinical trials. The results informed the development of a moderator guide that was used following IRB approval to facilitate an in-person focus group with individuals who had received CAR T therapy to treat DLBCL to understand their experience with the treatment and its impact on their HRQoL.

RESULTS: Eleven individuals treated with CAR T therapy participated in the 60-minute focus group. Participants highlighted impairments across several domains, including social functioning (82%), emotional functioning (64%), fatigue (55%), and physical functioning (46%) when discussing experiences before CAR T therapy. Participants reported worsening across these domains by up to 27% during CAR T therapy except for social functioning which was unchanged. Most participants highlighted experiencing substantial improvements across these domains six months after treatment where less than half of participants reported experiencing impairments in social functioning (46%) and only 36% reported fatigue or impairments in physical functioning. Two participants (18%) reported emotional functioning impairments (e.g., anxiety, fear) six months after treatment.

CONCLUSIONS: This study provided valuable qualitative patient data on the impact of CAR T therapy on HRQoL. The results provided supportive evidence for domains in various PRO measures – like the EORTC QLQ-C30 and EQ-5D –used in DLBCL clinical trials; however, more research is needed to validate the qualitative results.