Data Collection
Demographic and clinical data were abstracted from the patient’s medical
record at time of enrollment. Additional self-reported demographic data
were collected from both patient and parent participants at time of
enrollment via REDCap. Qualitative data collection and analysis followed
the Standards for Reporting Qualitative Research
guidelines.22 Study staff trained in qualitative
methods conducted interviews at their local institution (SCH: AS, KS;
SJ: AK; NCI: LW). Interviews occurred between April 2020 and August
2022. The interview guide was based on models of HRQOL and symptom
burden23, 24 and informed by the research team’s
clinical experience. The finalized interview guide consisted of
open-ended questions and optional probes to facilitate semi-structured
interviews (Appendix A). The
primary aim of the interview was to explore supportive care needs during
CAR T cell therapy, focusing on symptom burden, communication
needs/preferences, and psychosocial support. Interviews were completed
by phone three months post-infusion (+/- four weeks). For families where
both the child and parent participated, families chose joint or separate
interviews per personal preference. Interviews were audio-recorded,
de-identified, and transcribed verbatim. The mean duration was 34
minutes (range 10-70 minutes). A $25 gift card was offered to each
participant following interview completion.