A qualitative service evaluation of patient and caregiver experiences of CAR-T therapy: Recommendations for service development and implications for palliative care teams
Open accessAbstract
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.
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The complexity and high cost of CAR-T-cell therapy place a substantial burden on family caregivers.
“The complexity and high cost of this treatment not only complicate clinical management but also place a substantial burden on family caregivers.”
From The burdens, coping strategies, and unmet needs of family caregivers of Chinese patients with lymphoma receiving commercial CAR-T-cell therapy: A qualitative study (2026) · cites this paper as [17]
The Background describes a complex CAR-T treatment pathway, and the Findings (Treatment experiences) describe anxiety and disruption for caregivers. The paper supports a caregiver burden associated with treatment, but the cited passages do not attribute that burden to high treatment costs or discuss those costs. (LLM, conf=0.86)
Experimental — accuracy not yet measuredSimilar findings have been reported among caregivers of CAR-T-cell therapy recipients in Western countries, who also reported emotional distress.
“Similar findings have been reported among caregivers of CAR-T-cell therapy recipients in Western countries, who also reported emotional distress.”
Recent reports from the United Kingdom found that caregivers of CAR-T-cell therapy recipients rarely mentioned financial concerns.
“Unlike recent reports from the United Kingdom, where caregivers of CAR-T-cell therapy recipients rarely mentioned financial concerns.”
From The burdens, coping strategies, and unmet needs of family caregivers of Chinese patients with lymphoma receiving commercial CAR-T-cell therapy: A qualitative study (2026) · cites this paper as [17]
The Setting/participants section identifies a UK CAR-T study that included caregivers. The Findings section, “Dealing with uncertainty,” says participants reported anxieties about finances, but does not say how often caregivers specifically mentioned them. The claim that caregivers rarely mentioned financial concerns therefore cannot be verified from our copy. (LLM, conf=0.73)
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- Authors
- Stenson, C. L., Vidrine, J., Dewhurst, F., Osborne, W., Menne, T., & Stocker, R.
- Affiliations
- Newcastle University (GB)
- Newcastle upon Tyne Hospitals NHS Foundation Trust (GB)
- Corresponding author
- Stenson, Charlotte L
- ORCID
- Venue
- Palliative Medicine
- Publisher
- SAGE Publications
- Published
- 2022-11-25
- Volume
- 37
- Issue
- 2
- Pages
- 215-220
- ISSN
- 0269-2163 (ISSN-L)
- 1477-030X
- PMC
- PMC9896256
- OpenAlex
- W4310296350
- Cited by
- 34
- References
- 19
- Citations by year
- 2026: 8 · 2025: 9 · 2024: 13 · 2023: 4
- FWCI
- 2.72
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Locations
- Palliative Medicine (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Newcastle University ePrints (Newcastle Univesity) (cc-by)
- Funders
- Northern Alliance Advanced Therapies Treatment Centre
- Topics
- Health Sciences › Medicine › Oncology › CAR-T cell therapy research
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Keywords
- CAR T-cell therapy, patient experience, caregiver experiences, palliative care, supportive care needs, hematologic malignancies, quality of life, prognostic uncertainty, psychological morbidity, specialist nurses, service development, patient-centered care
- MeSH terms
- Receptors, Chimeric Antigen, Humans, Palliative Care, Caregivers, Hematologic Neoplasms, Qualitative Research, Hospice and Palliative Care Nursing
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