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A qualitative service evaluation of patient and caregiver experiences of CAR-T therapy: Recommendations for service development and implications for palliative care teams

Lookup NU author(s): Dr Charlotte Stenson, Dr Felicity Dewhurst, Dr Wendy Osborne, Dr Tobias Menne, Dr Rachel Stocker



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


© The Author(s) 2022. 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 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/participants: All 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). 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 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. 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.

Publication metadata

Author(s): Stenson CL, Vidrine J, Dewhurst F, Osborne W, Menne T, Stocker R

Publication type: Article

Publication status: Published

Journal: Palliative Medicine

Year: 2023

Volume: 37

Issue: 2

Pages: 215-220

Print publication date: 01/02/2023

Online publication date: 25/11/2022

Acceptance date: 02/04/2018

Date deposited: 16/06/2023

ISSN (print): 0269-2163

ISSN (electronic): 1477-030X

Publisher: Sage Publications Ltd


DOI: 10.1177/02692163221138880

PubMed id: 36428287


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Funder referenceFunder name
Northern Alliance Advanced Therapies Treatment Centre