Methods
ARF, pain
ARF
The clinical aspects of the SCIP trial have been described elsewhere by Kado et al [For the qualitative component, all study participants were interviewed in English by one of two investigators at four timepoints–immediately prior to their infusion, during their infusion, two hours post-infusion and approximately seven days after dosing. All interviews occurred face-to-face. Interviews were between five and thirty minutes in length, with the first three taking place bedside in the clinical suite the trial was being conducted in, and the last in a private consult room. The semi-structured interviews used a standardised interview guide consisting of a series of open-ended questions regarding reasons for taking part in the study, experience of clinical procedures (including dried blood sample [DBS] collection from finger prick samples, intravenous cannula, and subcutaneous catheter insertion), experience of the infusion, tolerability of the procedure, ability to manage pain in the days post-infusion and suggestions for improvement. Participants were also asked to reflect on how this procedure might be tolerated by children, adolescents and young adults living with ARF [Interviews were audio recorded and transcribed verbatim. Transcripts were thematically analysed according to the methods detailed by Braun and Clarke [The study was approved by Bellberry Human Research Ethics Committee (2020-12-1348) and registered with the Australian New Zealand Clinical Trials Registry (ACTRN12622000916741). All participants provided written, informed consent prior to participating.