Patient and Caregiver Experiences of CAR T Cell Therapy for Blood Cancer in the UK: A Qualitative Study

Background Advanced cell therapies, including chimeric antigen receptor T cell (CAR T cell) therapies, offer novel opportunities for the treatment of advanced blood cancers such as lymphoma and leukaemia. However, as these therapies are relatively new, there is limited information on the experiences of patients and informal caregivers of the treatment which may influence the uptake of these therapies. The aim of this qualitative study was to explore their experiences to facilitate the identification of specific issues that should be addressed to positively impact patient outcomes and experiences of care. Methods We conducted semi-structured qualitative interviews with 26 CAR T cell recipients from four UK CAR T cell centres who were ≥ 1 month post-treatment and nine caregivers. Interviews explored participants’ experiences of CAR T cell therapy and perspectives on key issues. Data from the interviews were inductively coded using thematic analysis. Results The main themes identified included (1) opinions of information provision, (2) experiences of protective isolation, (3) impacts of illness and treatment, (4) reflections on support needed and received, and (5) role of charities and support groups. Participants highlighted the need for support specifically for caregivers and provided practical suggestions for improving the experiences of future patients. Conclusions Interventions to address the issues raised need to be co-developed with key stakeholders, including patients, caregivers, healthcare professionals, policymakers and charitable organisations.