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.