Background Chimeric 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.
Aim To explore the patient and caregiver experience of CAR-T therapy and identify unmet needs to inform service development.
Design A qualitative longitudinal interview study. Sixteen interviews were carried out between December 2020-March 2021 with patients (n=10) and family caregivers (n=4). Thematic analysis was underpinned by an interpretative, phenomenological approach.
Setting/Participants All patients and caregivers attending a 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).
Results Identified 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 social functioning. 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.
Conclusion Patients 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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