Quality of life in caregivers of patients receiving chimeric antigen receptor T‐cell therapy
Open accessAbstract
Objective: Informal family caregivers provide critical support for patients receiving chimeric antigen receptor (CAR) T‐cell therapy. However, caregivers' experiences are largely unstudied. This study examined quality of life (QOL; physical functioning, pain, fatigue, anxiety, and depression), caregiving burden, and treatment‐related distress in caregivers in the first 6 months after CAR T‐cell therapy, when caregivers were expected to be most involved in providing care. Relationships between patients' clinical course and caregiver outcomes were also explored. Methods: Caregivers completed measures examining QOL and burden before patients' CAR T‐cell therapy and at days 90 and 180. Treatment‐related distress was assessed at days 90 and 180. Patients' clinical variables were extracted from medical charts. Change in outcomes was assessed using means and 99% confidence intervals. Association of change in outcomes with patient clinical variables was assessed with backward elimination analysis. Results: A total of 99 caregivers (mean age 59, 73% female) provided data. Regarding QOL, pain was significantly higher than population norms at baseline but improved by day 180 (p < .01). Conversely, anxiety worsened over time (p < .01). Caregiver burden and treatment‐related distress did not change over time. Worsening caregiver depression by day 180 was associated with lower patient baseline performance status (p < .01). Worse caregiver treatment‐related distress at day 180 was associated with lower performance status, intensive care unit admission, and lack of disease response at day 90 (p s < 0.01). Conclusions: Some CAR T‐cell therapy caregivers experience pain, anxiety, and burden, which may be associated patients' health status. Further research is warranted regarding the experience of CAR T‐cell therapy caregivers.
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Quantitative studies have shown that 15% of family caregivers of patients receiving CAR-T-cell therapy experience moderate to severe burdens, and 47.7% exhibit symptoms of depression.
“Quantitative studies have shown that 15% of family caregivers of patients receiving CAR-T-cell therapy experience moderate to severe burdens, and 47.7% exhibit symptoms of depression.”
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 [26]
The Results report that 15% of CAR-T caregivers had moderate to severe burden at baseline. The paper discusses caregiver depression, but the passages retrieved for “47.7%” and depressive symptoms do not report that prevalence, so the second figure is not supported by our copy. (LLM, conf=0.88)
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.”
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- Authors
- Barata, A., Hoogland, A. I., Hyland, K. A., Otto, A. K., Kommalapati, A., Jayani, R. V., Irizarry‐Arroyo, N., Collier, A., Rodriguez, Y., Welniak, T. L., Booth‐Jones, M., Logue, J., Small, B. J., Jain, M. D., Reblin, M., Locke, F. L., & Jim, H. S. L.
- Affiliations
- Moffitt Cancer Center (US)
- University of South Florida (US)
- Vanderbilt University Medical Center (US)
- Department of Health Outcomes and Behavior Moffitt Cancer Center Tampa Florida USA
- Corresponding author
- Jim, Heather S. L.
- ORCID
- Venue
- Psycho-Oncology
- Publisher
- Wiley
- Published
- 2021-04
- Volume
- 30
- Issue
- 8
- Pages
- 1294-1301
- ISSN
- 1057-9249 (ISSN-L)
- 1099-1611
- PMC
- PMC9828891
- OpenAlex
- W3136045254
- Cited by
- 23
- References
- 34
- Citations by year
- 2026: 4 · 2025: 8 · 2024: 6 · 2023: 1 · 2022: 4
- FWCI
- 4.29
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Psycho-Oncology (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Cancer Institute (K23CA201594, T32CA090314, P30CA076292)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Oncology › CAR-T cell therapy research
- Keywords
- CAR T-cell therapy, family caregivers, caregiver quality of life, caregiver burden, anxiety, depression, pain, fatigue, performance status, intensive care unit admission, disease response, hematologic malignancies
- MeSH terms
- Receptors, Chimeric Antigen, Depression, Female, Humans, Male, Middle Aged, Quality of Life, Immunotherapy, Adoptive, Caregivers, Cell- and Tissue-Based Therapy
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