Multi-Stakeholder Qualitative Interviews to Inform Measurement of Patient Reported Outcomes After CAR-T

Akinola, Idayat; Cusatis, Rachel; Pasquini, Marcelo C.; Shaw, Bronwen E.; Bollu, Vamsi; Dalal, Anand A.; Tesfayem, Mimi; Flynn, Kathryn E.

doi:10.1016/j.jtct.2023.01.004

Cited by 12 publications

(10 citation statements)

References 28 publications

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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%

“…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. 41,105,108 Many patients also experience a short-term decline in quality of life during the first 2 weeks after infusion, coinciding with the period of hospitalization and peak symptom burden, while lingering fatigue, drowsiness, and reduced appetite are also common during the first 3 months. 106,[109][110][111] Despite this, it should be emphasized that successful treatment with CAR-T cell therapy has been shown to achieve rapid, meaningful, and enduring improvements in patient-reported quality of life starting within the first months of treatment.…”

Section: Psychosocial Effectsmentioning

confidence: 99%

“…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 41,105,108 . Many patients also experience a short‐term decline in quality of life during the first 2 weeks after infusion, coinciding with the period of hospitalization and peak symptom burden, while lingering fatigue, drowsiness, and reduced appetite are also common during the first 3 months 106,109–111 .…”

Section: Psychosocial Effectsmentioning

confidence: 99%

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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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Section: Psychosocial Effectsmentioning

confidence: 99%

Section: Psychosocial Effectsmentioning

confidence: 99%

Section: Psychosocial Effectsmentioning

confidence: 99%

See 1 more Smart Citation

Long‐term survivorship care after CAR‐T cell therapy

Puckrin,

Jamani,

Jimenez‐Zepeda

2023

European J of Haematology

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“…Furthermore, findings from cross‐sectional studies indicate that a subset of patients undergoing CAR T‐cell therapy experience psychological distress, neurocognitive impairment, fatigue, and pain during the initial year after treatment. 8 , 9 , 10 , 11 These various aspects of HRQoL may influence long‐term well‐being. Nevertheless, clinical trials and real‐life studies have predominantly used generic HRQoL questionnaires such as the EQ‐5D, questionnaires that screen symptoms related to the disease or its treatment such as the EORTC‐QLQC30, or a symptom‐burden questionnaire such as items from the PRO‐CTCAE item bank.…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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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Weathering the storm when the end of the road is near: A qualitative analysis of supportive care needs during CAR T‐cell therapy in pediatrics

Steineck,

Silbert,

Palm

et al. 2024

Pediatric Blood & Cancer

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BackgroundChimeric antigen receptor (CAR) T‐cell therapy provides promising outcomes in relapsed/refractory B acute lymphoblastic leukemia (ALL), yet still carries high toxicity rates and relatively poor long‐term survival. Efficacy has yet to be demonstrated in other diagnoses while toxicity and risk profiles remain formidable. To date, treatment‐related symptom burden is gleaned from clinical trial toxicity reports; the patient perspective remains understudied.MethodsEnglish‐ or Spanish‐speaking patients (ages 8–25 years) undergoing CAR T‐cell therapy for any malignancy and their primary caregivers were recruited from Seattle Children's Hospital (SCH), St. Jude Children's Research Hospital (SJCRH), and the Pediatric Oncology Branch of the National Cancer Institute (NCI). Both patient and caregiver completed semi‐structured dyadic interviews 3 months post treatment. We used directed content analysis for codebook development and thematic network analysis for inductive qualitative analysis.ResultsTwenty families completed interviews (13 patients, 15 parents). Patients were a median age 16.5 years, predominantly female (65%), White (75%), and diagnosed with ALL (75%). Global themes included “A clear decision,” “Coping with symptoms,” and “Unforeseen psychosocial challenges.” When families were asked to describe the “most challenging part of treatment,” most described “the unknown.” Most reported “the symptoms really weren't that bad,” even among patients hospitalized for severe toxicity events. Fatigue, pain, and nausea were the most prevalent symptoms. Importantly, only one family would have chosen a different therapy, if given another opportunity.ConclusionsAlthough physical symptoms were largely tolerable, recognizing supportive care opportunities remains imperative, particularly psychosocial concerns.

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Multi-Stakeholder Qualitative Interviews to Inform Measurement of Patient Reported Outcomes After CAR-T

Cited by 12 publications

References 28 publications

Long‐term survivorship care after CAR‐T cell therapy

Long‐term survivorship care after CAR‐T cell therapy

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

Weathering the storm when the end of the road is near: A qualitative analysis of supportive care needs during CAR T‐cell therapy in pediatrics

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