Quality of Life and Prognostic Awareness in Caregivers of Patients Receiving Chimeric Antigen Receptor T Cell Therapy
Open accessAbstract
Caregivers of patients undergoing chimeric antigen receptor T cell therapy (CAR-T) play a critical role during treatment, yet their experience remains largely unaddressed. We aimed to longitudinally describe quality of life (QoL) and psychological distress, as well as prognostic awareness, in caregivers and explore the association of prognosis awareness with baseline psychological distress. We conducted a longitudinal study of caregivers of patients undergoing CAR-T and examined QoL (CAReGiverOncology QoL questionnaire) and psychological distress (Hospital Anxiety and Depression Scale) prior to CAR-T (baseline) and at days 7, 30, 90, and 180 post-CAR-T. At baseline, caregivers and patients completed the Prognostic Awareness Impact Scale, which examines cognitive understanding of prognosis, emotional coping with prognosis, and adaptive response (ie, capacity to use prognostic awareness to inform life decisions). We enrolled 58% (69 of 120) of eligible caregivers. Caregivers reported QoL impairments that did not change over time (B = 0.09; P = .452). The rates of clinically significant depression and anxiety symptoms were 47.7% and 20.0%, respectively, at baseline, and 39.1% and 17.4% at 180 days. One-third (32%) of the caregivers and patients reported that their oncologist said the cancer is curable. Caregivers' greater emotional coping with prognosis was associated with fewer symptoms of anxiety (B = -.17; P < .001) and depression (B = -.02; P < .001). Cognitive understanding of prognosis and adaptive response were not associated with psychological distress. Caregivers reported QoL impairments throughout the study period. A substantial proportion of caregivers experienced psychological distress and reported misperceptions about the prognosis, highlighting the need for supportive care interventions.
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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 [18]
The Results section (QoL trajectory and Psychological distress over time; page unavailable) reports depression symptoms in 20.0% of caregivers before treatment, not 47.7%; 47.7% is the figure for anxiety symptoms. The paper discusses caregiver burden, but the passages found do not report that 15% experienced moderate-to-severe burden. An inconsistent figure in the paper’s abstract does not resolve the discrepancy with its detailed Results. (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.”
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Cited by
Sorted by citations
Evolving strategies for addressing CAR T-cell toxicities
Rankin, A. W., Duncan, B. B., Allen, C., Silbert, S. K., & Shah, N. N. (2024) · Cancer and Metastasis Reviews · doi:10.1007/s10555-024-10227-1 · Cited by 22 · see citing works
“PROs have been successfully measured across multiple CAR T-cell trials for patients with hematologic malignancies [147–153] as well as their caregivers [154].”
Strongyli, E., Evangelidis, P., Sakellari, I., Gavriilaki, M., & Gavriilaki, E. (2024) · Pharmaceuticals · doi:10.3390/ph17050591 · Cited by 13 · see citing works
“In the era of precision medicine, the prevention of neurocognitive dysfunction is substantial to improve the outcomes of our patients, and novel technologies, such as artificial intelligence models might be helpful in this direction [97,98].”
BackgroundBanerjee, R. K., Amonoo, H. L., Barata, A., Bhatt, N. S., Espinoza-Gutarra, M. R., Jayani, R., Katz, H., Kennedy, V. E., Nawas, M. T., Steineck, A., et al. (2025) · Transplantation and Cellular Therapy · doi:10.1016/j.jtct.2025.06.030 · Cited by 12 · see citing works
Self-citationUnmet needs and lived experience of patients receiving CAR T-cell therapy
O'Shea, P., Johnson, P. C., El-Jawahri, A., & Leblanc, T. W. (2025) · Leukemia and Lymphoma · doi:10.1080/10428194.2025.2455488 · Cited by 8 · see citing works
“Similar to patients, as discussed previously, improved emotional coping of caregivers with prognosis was associated with fewer depression and anxiety symptoms. these findings highlight the need for caregiver directed supportive interventions [49].”
Self-citationXie, C., Duan, H., Liu, H., Wang, Y., Sun, Z., & Lan, M. (2024) · Supportive Care in Cancer · doi:10.1007/s00520-024-08799-3 · Cited by 8 · see citing works
The patient and caregiver experience of CAR T-cell therapy: A qualitative analysis
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“6,7 This is especially concerning as care moves to outpatient settings, 8 where caregivers will have more responsibility for patient care and safety.”
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“16,18 23 – 25 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.”
InfluentialSnoek, B., Oldenmenger, W., van Hooft, S. V., & Mutsaers, P. (2025) · Seminars in Oncology Nursing · doi:10.1016/j.soncn.2025.151951 · Cited by 1 · see citing works
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“16 23 This is consistent with this study, where patients acknowledged the positive discourse around the treatment but experienced a lack of preparation for treatment failure and described concerns about the future.”
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“It is interpretive and does not represent additional statistical testing likewise describe burden, distress, and prognostic uncertainty [29–31].”
Is there a role for palliative care in CAR T-cell therapy?
Vidrine, J., & Droney, J. (2026) · Current Opinion in Supportive and Palliative Care · doi:10.1097/spc.0000000000000824
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“These findings align with emerging CAR T-cell caregiver studies demonstrating persistent depressive symptoms and quality-of-life impairments at 180 days post-treatment [10,12,21].”
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“12-15 In the long term, many CAR-T recipients will have progression or relapse of disease, which can worsens HRQoL.”
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- Authors
- Barata, A., Dhawale, T., Newcomb, R. A., Amonoo, H. L., Nelson, A. M., Yang, D., Karpinski, K., Holmbeck, K., Farnam, E., Frigault, M., Johnson, P. C., & El-Jawahri, A.
- Affiliations
- Harvard University (US)
- Brigham and Women's Hospital (US)
- Massachusetts General Hospital (US)
- Corresponding author
- Barata, Anna
- ORCID
- Venue
- Transplantation and Cellular Therapy
- Publisher
- Elsevier BV
- Published
- 2024-04
- Volume
- 30
- Issue
- 4
- Pages
- 452.e1-452.e11
- ISSN
- 1083-8791 (ISSN-L)
- 2666-6367
- PMC
- PMC12148236
- OpenAlex
- W4391056152
- Cited by
- 13
- References
- 53
- Citations by year
- 2026: 1 · 2025: 8 · 2024: 4
- FWCI
- 2.23
- Type
- journal article
- Language
- en
- Update notices
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Transplantation and Cellular Therapy (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- Leukemia and Lymphoma Society
- National Institutes of Health
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- CAR T-cell therapy, caregivers, quality of life, prognostic awareness, psychological distress, anxiety, depression, caregiver burden, supportive care
- MeSH terms
- Receptors, Chimeric Antigen, Depression, Humans, Longitudinal Studies, Prognosis, Quality of Life, Caregivers, Cell- and Tissue-Based Therapy
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