ABSTRACT
Introduction: Chimeric Antigen Receptor T-cell therapy (CAR-T) is a potentially life-saving treatment for refractory haematological malignancies. Many UK CAR-T services are in their infancy. Patient perspectives on service delivery, treatment toxicity and impact on health related quality of life (HRQoL) are lacking. This qualitative evaluation aimed to explore the patient and carer experience of CAR-T and identify areas for service improvement. Methods: Patients who received CAR-T between April 2019 and March 2021 at the Freeman Hospital, Newcastle-upon-Tyne, who attended primary or follow-up appointments between December 2020 and March 2021 were asked if they wanted to take part in the evaluation. 16 semi-structured qualitative interviews were carried out with 10 patients and 4 carers at specific time points in the patient journey: hospital admission prior to CAR T-cell infusion, day 28 postinfusion and routine follow-up appointments after treatment (8, 9, 12 and 18 months). Five patients completed 2 interviews (pre-infusion and day 28). Results: The mean age of the patients was 54 and 60% were female. Nine patients had diffuse large B-cell lymphoma and one had primary mediastinal B-cell lymphoma. Inductive thematic analysis identified three main themes. The importance of the CAR-T nurse specialist as a point of contact was consistently identified by patients and carers as vital to navigating the treatment process. The continuity of care and approachability associated with this role were linked to patient satisfaction and perceived level of support received. Reported treatment toxicity centred on fatigue, poor appetite/weight loss and problems with memory and cognition. Patients and carers were well prepared for side effects in the acute treatment phase but some felt less prepared for prolonged impact on physical function and cognition after discharge. CAR-T therapy was viewed as a 'lifeline,' but the uncertainty of treatment outcome caused significant anxiety, disruption to employment and family life, and made it difficult to make future plans. Many responses were framed by the COVID-19 pandemic which increased feelings of isolation and vulnerability and had a significant, negative impact on HRQoL. Conclusions: To our knowledge this is the first qualitative work exploring the views of CAR-T patients and carers at multiple points in the patient journey, including perspectives on long-term treatment impact. Considerations for service creation and development nationally and internationally include: the importance of a dedicated nurse specialist, preparing patients for and supporting them with prolonged treatment side effects, and the psychological challenges associated with prognostic uncertainty. Expanding indications of CAR-T therapy mean there is an urgent need for multi-centre studies incorporating patient-reported outcome data to inform patient centred care and service delivery.