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Lookup NU author(s): Dr Charlotte Stenson, Dr Felicity DewhurstORCiD, 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.
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
URL: https://doi.org/10.1177/02692163221138880
DOI: 10.1177/02692163221138880
PubMed id: 36428287
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