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
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.