• Charlotte L Stenson, Jennifer Vidrine, Felicity Dewhurst, Wendy Osborne, Tobias Menne, and Rachel Stocker.
• Population Health Sciences Institute, Faculty of Medical Sciences, Campus for Ageing and Vitality, Newcastle University, Newcastle upon Tyne, UK.
• Palliat Med. 2023 Feb 1; 37 (2): 215220215-220.

BackgroundChimeric Antigen-Receptor-T-cell (CAR-T) therapy is a potentially life-saving treatment for refractory haematological malignancies. Internationally, CAR-T services are undergoing rapid development. Despite this, research on the lived experiences of patients receiving novel immunotherapies is limited. Little is known about their supportive care needs. Consequently, dedicated palliative and supportive care services may not be considered.AimTo explore the patient and caregiver experience of CAR-T therapy and identify unmet needs to inform service development.DesignA qualitative longitudinal service evaluation. Sixteen interviews were conducted between December 2020 and March 2021 with patients (n = 10) and family caregivers (n = 4). Thematic analysis was underpinned by a constructivist approach.Setting/ParticipantsAll patients and caregivers attending one UK centre for CAR-T therapy were eligible. Semi-structured interviews were conducted at specific time points: prior to infusion, one month after infusion and follow-up post-treatment (5-18 months).ResultsIdentified themes described the unique challenges of CAR-T therapy. From the point of referral patients had a wide range of supportive care needs. Initially, this was attributed to prior receipt of multiple failed treatments. Subsequently, CAR-T side-effects impacted on quality-of-life and physical function. Significant psychological morbidity from prognostic uncertainty was described throughout. Patients and caregivers reported that a dedicated nurse specialist - an expert, consistent point of contact - was essential.ConclusionPatients and caregivers would benefit from early and ongoing support from palliative care, allied-health professionals and psychology. As indications for CAR-T therapy expand, there is an urgent need for multi-centre studies incorporating patient-reported outcome data to ensure patient-centred service delivery.

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