Abstract
Background/Objectives: Parents of children with acute lymphoblastic leukaemia (ALL) experience emotional distress throughout their child's treatment course. This study describes the psychological experience of Australian and New Zealand parents of children diagnosed with ALL. Methods: This prospective, longitudinal study assessed distress, anxiety, depression, anger and the need for help in parents of children with newly diagnosed ALL across eight sites between October 2018 and November 2022. Psychological symptoms were quantified using the Emotion Thermometer (ET) tool and Patient-Reported Outcome Measurement Information System (PROMIS) questionnaires. Participants were recruited within ninety days of chemotherapy commencement, with surveys distributed bimonthly thereafter. Results: One hundred and seventeen participants completed 327 survey responses spanning 0 to 62 months post-diagnosis. Parental distress peaked within the first 6 months and 40% of parents reported clinically significant symptoms across four or more domains as measured by our questionnaires. Anxiety was the most consistently elevated symptom, with over 50% of responses above the clinical cut-off. Depression and the need for help also peaked closer to diagnosis and declined over time. In contrast, anger remained stable, with 27% reporting clinically significant scores across all time points. Increased time since diagnosis was significantly associated with reductions in distress, anxiety and depression scores. Conclusions: Australian and New Zealand parents experience high levels of psychological distress within the first six months following their child's diagnosis of ALL. A notable minority continue to report elevated distress levels over time, identifying a need for improved psychological support for family wellbeing throughout the ALL treatment trajectory.