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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
  • +8
  • Angela Steineck,
  • Sara Silbert,
  • Kallie Palm,
  • Jordyn Nepper,
  • Dagny Vaughn,
  • Kelly Shipman,
  • Haneen Shalabi,
  • Lori Wiener,
  • Liam Comiskey,
  • Jennifer M. Knight,
  • Deena Levine
Angela Steineck
Medical College of Wisconsin Department of Pediatrics

Corresponding Author:[email protected]

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Sara Silbert
National Cancer Institute Pediatric Oncology Branch
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Kallie Palm
Medical College of Wisconsin Department of Pediatrics
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Jordyn Nepper
Medical College of Wisconsin
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Dagny Vaughn
The University of Tennessee Health Science Center College of Medicine
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Kelly Shipman
University of Pennsylvania Perelman School of Medicine
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Haneen Shalabi
National Cancer Institute Pediatric Oncology Branch
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Lori Wiener
National Cancer Institute Pediatric Oncology Branch
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Liam Comiskey
Dana-Farber Cancer Institute Department of Psychosocial Oncology and Palliative Care
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Jennifer M. Knight
Medical College of Wisconsin
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Deena Levine
St Jude Children's Research Hospital Department of Oncology
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Abstract

Background: Chimeric Antigen Receptor (CAR) T cell therapy provides promising outcomes in relapsed/refractory B Acute Lymphoblastic Leukemia (ALL) yet still carries high toxicities 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. Methods: English or Spanish-speaking patients (ages 8-25 years) undergoing CAR T cell therapy for any malignancy and their primary caregiver 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. Results: Twenty 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. Conclusions: Although physical symptoms were largely tolerable, recognizing supportive care opportunities remains imperative, particularly psychosocial concerns.
06 Mar 2024Submission Checks Completed
06 Mar 2024Assigned to Editor
06 Mar 2024Submitted to Pediatric Blood & Cancer
06 Mar 2024Review(s) Completed, Editorial Evaluation Pending
12 Mar 2024Reviewer(s) Assigned
10 Apr 2024Editorial Decision: Revise Minor
08 May 2024Review(s) Completed, Editorial Evaluation Pending
10 May 2024Editorial Decision: Accept