Perception of prognosis, quality of life, and distress in patients receiving chimeric antigen receptor T‐cell therapy

Dhawale, Tejaswini; Johnson, Patrick Connor; Gaballa, Mahmoud R.; Nelson, Ashley M.; Lavoie, Mitchell W.; Boateng, Kofi; Greydanus, Claire; Frigault, Matthew J.; El‐Jawahri, Areej

doi:10.1002/cncr.34557

Cited by 11 publications

(10 citation statements)

References 60 publications

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“…We observed an improvement in anxiety symptoms, even at the time of hospitalization, perhaps due to optimism about the expected efficacy of CAR T cells. 40 Change was statistically and clinically relevant from Months 3 to 12. The proportion of patients with depressive symptoms decreased over time, but change was not clinically relevant.…”

Section: Discussionmentioning

confidence: 90%

“…In other studies, the prevalence of anxiety and depressive disorders at baseline are similar, ranging from 29% to 48% for anxiety and from 11% to 30% for depression. 8 , 40 , 41 Two studies found the prevalence of PTSD symptoms at baseline in 29% of patients before CAR T‐cell infusion. 6 , 40 Johnson and colleagues found a decrease in psychological distress over time, with 22% of patients experiencing anxiety and PTSD at 6 months.…”

Section: Discussionmentioning

confidence: 99%

“… 8 , 40 , 41 Two studies found the prevalence of PTSD symptoms at baseline in 29% of patients before CAR T‐cell infusion. 6 , 40 Johnson and colleagues found a decrease in psychological distress over time, with 22% of patients experiencing anxiety and PTSD at 6 months. This suggests that PSTD is likely to be present at baseline and not caused by the procedure.…”

Section: Discussionmentioning

confidence: 99%

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Remission after CAR T‐cell therapy: Do lymphoma patients recover a normal life?

Perthus,

Colin,

Charton

et al. 2024

HemaSphere

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Chimeric antigen receptor T cells (CAR T cells) can induce prolonged remission in a substantial subset of patients with relapse/refractory lymphoma. However, little is known about patients' life after CAR T‐cell therapy. We prospectively assessed the multidimensional recovery of lymphoma patients in remission, before leukapheresis, before CAR T‐cell infusion, and 3, 6, and 12 months thereafter. Validated tools were used to measure lymphoma‐related and global health‐related quality of life (HRQoL; Functional Assessment of Cancer Therapy‐Lymphoma [FACT‐Lym] and EQ‐5D‐5L), cognitive complaint (FACT‐Cognition), fatigue (FACIT‐Fatigue subscale), psychological status (Hospital Anxiety and Depression Scale, Post‐Traumatic Check List Scale), and sexuality (Relationship and Sexuality Scale). Beyond 12 months of remission, we also surveyed physical, professional, sexual, and general life status. At 3, 6, and 12 months, 53, 35, and 23 patients were evaluable, respectively. Improvement in lymphoma‐related HRQoL was clinically relevant at 3, 6, and 12 months with a mean change from baseline of 10.9 (95% confidence interval [CI]: 5.8; 16.1), 12.2 (95% CI: 4.2; 20.1), and 11.72 (95% CI: 2.06; 21.38), respectively. Improvement in global HRQoL, fatigue, and anxiety was clinically relevant, but 20%–40% of patients experienced persistent fatigue, psychological distress, and cognitive complaints over time. Beyond 12 months after CAR T cells, 81.8% of 22 evaluable patients were satisfied with their daily life. Physical activity, professional, sexual, and global well‐being had returned to prediagnosis levels in nearly half of the patients. We found an improvement in HRQoL after CAR T‐cell therapy including anxiety, depression, sexual satisfaction, and general well‐being. However, not all patients recover a “normal life.” Further research is needed to determine which patients are at risk of quality‐of‐life impairment to improve recovery after CAR T‐cell infusion.

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Section: Discussionmentioning

confidence: 90%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Remission after CAR T‐cell therapy: Do lymphoma patients recover a normal life?

Perthus,

Colin,

Charton

et al. 2024

HemaSphere

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“…Qualitative research studies have revealed a significant burden of psychologic distress among CAR-T cell recipients, including frequent symptoms of anxiety, depression, and post-traumatic stress disorder. 41,44,[104][105][106] Patients undergoing CAR-T cell therapy may experience a sense of loss, isolation, and frustration during repeated cycles of treatment and relapse, along with fear of recurrence and difficulty planning for the future in face of the uncertain prognosis following CAR-T cell therapy. 107 Additional challenges include the financial burden associated with treatment as well as the geographic, socioeconomic, and racial barriers to accessing CAR-T cell therapy.…”

Section: Psychosocial Effectsmentioning

confidence: 99%

Long‐term survivorship care after CAR‐T cell therapy

Puckrin,

Jamani,

Jimenez‐Zepeda

2023

European J of Haematology

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While cytokine release syndrome and immune effector cell‐associated neurotoxicity syndrome are well‐recognized acute toxicities of chimeric antigen receptor (CAR) T cell therapy, these complications have become increasingly manageable by protocolized treatment algorithms incorporating the early administration of tocilizumab and corticosteroids. As CAR‐T cell therapy expands to new disease indications and the number of long‐term survivors steadily increases, there is growing recognition of the need to appropriately evaluate and manage the late effects of CAR‐T cell therapy, including late‐onset or persistent neurotoxicity, prolonged cytopenias, delayed immune reconstitution and infections, subsequent malignancies, organ dysfunction, psychological distress, and fertility implications. In this review, we provide a practical approach to the long‐term survivorship care of the CAR‐T cell recipient, with a focus on the optimal strategies to address the common and challenging late complications affecting this unique population.

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“…13 Unfortunately, most patients will ultimately experience disease progression and die of their illness, 13,14 and prior studies have demonstrated high rates of psychological distress in CAR T-cell therapy recipients. 15 Given the complexities and toxicities of CAR T-cell therapy, it is essential for clinicians to adequately educate patients about the risks and benefits.…”

Section: Introductionmentioning

confidence: 99%

Pilot Randomized Controlled Trial of an Educational Video for CAR T-Cell Therapy Recipients

Johnson,

Dhawale,

Newcomb

et al. 2024

Journal of the National Comprehensive Cancer Network

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Background: CAR T-cell therapy has transformed the treatment of hematologic malignancies, but it is complex and challenging to convey to patients. Educational video interventions are efficacious for improving patient knowledge about cancer therapeutics and informing their care preferences, yet no educational videos have been evaluated in CAR T-cell therapy. Methods: We conducted a randomized controlled trial comparing an educational video versus usual care in adults (age ≥18 years) with hematologic malignancies receiving CAR T-cell therapy at Massachusetts General Hospital. Intervention participants watched a 13-minute video depicting how CAR T-cell therapy works, logistics, toxicities, prognosis, recovery, and approaches for dealing with prognostic uncertainty. The primary outcome was feasibility (≥60% enrollment rate). Secondary outcomes included acceptability (≥80% reporting comfort with the video), patients’ knowledge about CAR T-cell therapy (10-item test), and self-efficacy (Communication and Attitudinal Self-Efficacy Scale–Cancer), decision satisfaction (Decision Conflict Scale), psychological distress (Hospital Anxiety and Depression Scale), and preference for CAR T-cell therapy. Results: We enrolled 79% (80/101) of eligible patients. Of that group, 91% (30/33) reported being very or somewhat comfortable watching the video, and 94% (31/33) would definitely or probably recommend the video. At 1 month, participants in the video arm reported higher self-efficacy (mean difference [MD], 9.2 [95% CI, –4.0 to 22.3]; Cohen’s d, 0.32), decision satisfaction (MD, 2.5 [95% CI, 0.7–4.2]; Cohen’s d, 0.67), and lower anxiety (MD, –0.8 [95% CI, –2.5 to 0.7]; Cohen’s d, 0.26) compared with participants in the usual care arm. At 1 week, both arms reported high preferences for CAR T-cell therapy (video arm, 94% [33/35]; usual care, 84% [27/32]). Conclusions: We found that an educational video for patients receiving CAR T-cell therapy was feasible and acceptable. The educational video demonstrated promising preliminary effects on patient self-efficacy and decision satisfaction and warrants further study.

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Perception of prognosis, quality of life, and distress in patients receiving chimeric antigen receptor T‐cell therapy

Cited by 11 publications

References 60 publications

Remission after CAR T‐cell therapy: Do lymphoma patients recover a normal life?

Remission after CAR T‐cell therapy: Do lymphoma patients recover a normal life?

Long‐term survivorship care after CAR‐T cell therapy

Pilot Randomized Controlled Trial of an Educational Video for CAR T-Cell Therapy Recipients

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