The patient and caregiver experience of CAR T-cell therapy: A qualitative analysis

Immunotherapies, such as CAR-T, have revolutionized cancer treatment for some cancers. However, these treatments often require active participation of a family member or friend to act as a caregiver at home for several weeks after infusion. Given the novelty of CAR-T, there is a need to better understand the experience of patients receiving these treatments and their caregivers.

As part of a larger study, patients receiving CAR-T and their caregivers were recruited to participate in semi-structured interviews about their experiences in treatment within a week of hospital discharge. Guided by the Dyadic Cancer Outcomes framework and using an inductive approach, trained coders qualitatively analyzed interview transcripts to identify key themes.

Ten patients and nine of their caregivers participated in interviews in 2021. Three key themes surrounding CAR-T experiences were identified: individual, relational, and contextual. Firstly, the CAR-T experience impacted physical and psychosocial aspects of life for patients and caregivers. Secondly, the isolating and intensive nature of caregiving after discharge affected relationships between patients and caregivers. Thirdly, social contexts such as food, housing, and travel costs complicated the treatment experience.

Although CAR-T is a novel treatment, the experiences of patients and especially caregivers are often similar to those receiving other forms of cancer treatment. However, due to the requirement of a constantly-present caregiver in the weeks after therapy, these experiences may have been intensified. Future work is needed to develop inclusive, family-centered programs to help support patients and their caregivers through cancer treatments.