CARE-T: The CAREgiver’s PerspecTive
The unprecedented effectiveness of CAR T-cell therapy for B-cell malignancies can come at the cost of acute toxicities such as cytokine release syndrome (CRS), neurotoxicity, and infections. Therefore, stringent monitoring is required during the acute toxicity phase . Consequently, in the outpatient setting, patients need 24/7 supervision of an informal caregiver.1 Hence, caring for these patients not only entails providing emotional support, but also the responsibility to alert for acute toxicities. While caregivers play a crucial role, studies focusing on their wellbeing, burden and needs when supporting CAR-T patients are scarce.2-3
CARE-T, a mixed methods study combining validated questionnaires with focus group sessions, was part of a CAR-T conference for lymphoma patients and their caregivers organized by Amsterdam UMC in September 2023. This event was designed by healthcare professionals, patients and caregivers. As part of the invitation, caregivers were informed about the study, those who consented joined a dedicated caregiver session in subgroups of 4-6 people. First, participants completed questionnaires about sociodemographic factors and CAR-T recipient characteristics, the burden of caregiving (EDIZ-plus)4 and care-related quality of life (CarerQol-7D)5 during the 1st month after CAR-T. A 60-minute focus group discussion followed, facilitated by a trained healthcare professional. These discussions focused on energy resources, stressors (factors contributing to a positive or stressful caregiving experience) and recommendations for improving the caregiver’s experience.
A total of 28 patients and 22 caregivers attended the conference and 21/22 participated in the study (median age: 61 years, 67% female, Table 1). Most caregivers were the patient’s partner and 91% had children. All patients had been admitted for at least 7 days, 3 were admitted for the entire 1st month, 4 were admitted to ICU and 2 were re-admitted in the 1st month.
All caregivers experienced some degree of caregiver burden, with 19% reporting it as severe. Mental health and relational problems were reported by 62% and 33%, respectively. Also, 43% experienced physical health problems and 43% found it difficult to combine care tasks with their daily activities. A small percentage (5%) reported financial problems. Despite the challenges 95% perceived fulfillment from providing care tasks and 81% received support from family and friends. Caregivers indicated an average happiness score of 7.4. Recommendations for improvement included psychological support, peer contact and dedicated caregiver ‘me-time’.
Although the majority of caregivers found fulfillment, a significant number experienced a moderate to severe burden and are in need of more support. A CAR-T information and education conference including dedicated sessions for caregivers can be a valuable approach to evaluate patient & caregiver experiences and to identify strategies to improve the experience and wellbeing of caregivers during CAR-T cell treatment.