Experiences of Patients and Family Caregivers After Chimeric Antigen Receptor T-Cell Therapy: A Qualitative Study

OBJECTIVES: 

This study aimed to explore the experiences and counseling needs of family caregivers and patients with relapsed or refractory B-cell lymphoma after CAR T-cell therapy. 

METHODS: 

A qualitative descriptive design was used. Twelve interviews were conducted with patients individually or together with their family caregiver between December 2021 and March 2022. The interviews were transcribed verbatim, coded and a qualitative thematic analysis was carried out. 

RESULTS: 

Five themes that influenced experiences and counseling needs after CAR T-cell therapy were identified: (1) emotional impact, (2) impact on daily life, (3) individual coping strategies, (4) social support, and (5) professional care. Most patients experienced fear of disease progression and infections. Others experienced CAR T-cell therapy as easier than previous treatment with chemotherapy followed by an autologous stem cell transplant. Both patients and family caregivers emphasized the importance of their support system and clear information about the treatment. Some family caregivers found the treatment pathway more challenging than patients, especially when neurological side-effects occurred. 

CONCLUSION: 

Patients need personalized counseling before, during, and after treatment. Our study helps to identify important themes to consider during (after)care, where nurses play a crucial role. Family caregivers are important and may experience treatment differently. Therefore, they may need different counseling. Early identification of personal coping strategies can be a starting point for improving care. 

IMPLICATIONS FOR NURSING PRACTICE: 

CAR T-cell therapy can be a complex pathway and has a unique profile of toxicity. Family caregivers play an important role. Both can experience an impact on emotional well-being, daily life and social functioning. Hematology nurses should be aware of the potential impact of CAR T-cell therapy with the consideration that every person has different coping strategies and keep in mind that each person has different coping strategies and may need different counseling.