Patient and carer experience of chimeric antigen receptor T-cell therapy: a multicentre qualitative study

Objectives Chimeric Antigen Receptor T-cell (CAR-T) therapy is a complex, novel treatment for patients with relapsed/refractory haematological malignancies. Despite its advancement, research on the supportive care needs of this patient group and their caregivers is limited. This study aimed to explore the experiences of patients undergoing CAR-T cell therapy and their caregivers and identify any unmet needs of this group. Methods This multicentre, qualitative, longitudinal study recruited nine patients and five caregivers from three UK CAR-T therapy centres. Semistructured interviews were carried out between October 2021 and October 2022 and conducted in three phases: within 3 weeks of leukapheresis, mid-treatment and within 4 weeks of the first positron emission tomography scan (performed at 28 days postinfusion to assess treatment response). Thematic analysis was used to analyse interview data. Results Thematic analysis identified five distinct themes: the rollercoaster journey to reach CAR-T; balancing hope, realism and resignation; navigating CAR-T side effects and their impact; barriers to addressing uncertainty; and the tapestry of support. Notably, a high symptom burden and unique treatment toxicities were evident, alongside the need to navigate an uncertain (yet potentially curative) disease trajectory. Support from a dedicated CAR-T nurse specialist was crucial, and the potential of further palliative/supportive care provision was underscored. Conclusion The experience of CAR-T therapy is characterised by often unique symptom burden, uncertainty and resilience. It is vitally bolstered by the support of professionals and carers. There is evidence of missed opportunities to support patients and caregivers with the challenges of navigating an uncertain future, and ‘parallel planning’ conversations may be a way to meet this need. Future research should focus on the involvement of collaborative palliative/supportive care to support this patient group.