Factors Related to Long-Term Caregiving Burden Among Chimeric Antigen Receptor (CAR) T-Cell Recipients and Their Informal Caregivers.

Abstract

Context: Caregivers are essential in the care of CAR T-cell patients, especially immediately before and after CAR T-cell therapy. However, the long-term CAR T-cell therapy caregiving implications are understudied.

Objectives: We aimed to characterize long-term caregiver health-related quality of life (HRQoL) and caregiving burden and understand the relationship between long-term caregiving burden and patient-reported HRQoL, cognitive function, and symptom burden.

Methods: This cross-sectional study included patients (≥18 years of age) who had received CAR T-cell therapy for B-cell lymphoma or multiple myeloma in the past one to five years and were in remission. Participating patients identified their current caregiver or the individual who was their caregiver at the time of infusion. Patients completed a survey with measures of HRQoL, cognitive function and symptom burden, while caregivers completed measures of HRQoL and caregiving burden. Linear regression was used to identify predictors of caregiving burden.

Results: In total, 58 patients and 31 caregivers participated. Caregiver HRQoL was similar to population norms, and 26% of caregivers reported mild to moderate caregiving burden. Caregiver age, and patient mental HRQoL, cognitive function, and symptom burden were significantly associated with caregiving burden in bivariate analyses (P < .05). Caregiver age was a significant predictor of caregiving burden in the linear regression analysis.

Conclusion: Caregivers of patients in sustained remission 1 to 5 years after CAR T-cell therapy report good HRQoL and minimal caregiving burden. However, clinicians should be aware that younger caregivers and caregivers of patients with worse symptom burden, cognitive function and HRQoL may experience increased caregiving burden.