Patients' and caregivers' perspectives on preparedness for and experience with chimeric antigen receptor T-cell therapy

Abstract

Background: Chimeric antigen receptor-T (CAR-T) cell therapy has improved survival, yet its toxic profile may impact on survivors' well-being. We examined patients' and caregivers' perspectives on the most common, severe, and distressing side effects across recovery (ie, first 60 days) and survivorship (ie, 60 days and onwards) and explored their perspectives on the education received to prepare for CAR-T.

Materials and methods: We conducted semi-structured interviews with patients and caregivers addressing (1) how they prepared for CAR-T, (2) the side effects experienced during the first-year post-treatment, and (3) how to best educate future patients and caregivers.

Results: We included 19 patients and 12 caregivers. We identified 6 major themes. First, participants reported intense hope as well as stress and fear when presented with CAR-T, viewing it as a distinct and exceptional treatment. Second, following CAR-T infusion, some patients experienced intense symptoms (eg, fatigue, pain), while others were confused if not presenting with symptoms. Third, following discharge, patients experienced a myriad of ongoing symptoms, some of which were severe (eg, fatigue, cognitive symptoms, pain) and negatively impacted on their recovery. Fourth, some long-term survivors experienced ongoing symptoms but accepted this trade-off for being alive. Fifth, most patients and caregivers felt well prepared to cope with CAR-T, although some expressed the desire for more information on long-term side effects. Sixth, participants would recommend CAR-T to others while acknowledging the risk of experiencing side effects.

Conclusions: Participants commonly reported significant symptoms throughout treatment and recovery. Additional education on long-term survivorship is needed.

Keywords: caregiver; chimeric antigen receptor T-cell therapy; distress; quality of life; symptom burden.