Tracking Health Related Quality of Life From Diagnosis to Follow‐Up Among Australian Children With Acute Lymphoblastic Leukaemia

BACKGROUND: Acute lymphoblastic leukaemia (ALL) is one of the most treatable forms of paediatric cancer; however, there is a substantial burden of treatment-related toxicities (TRTs). In addition, the long-term changes in children's health-related quality of life (HRQoL) due to toxic treatments are not well understood. AIMS: To describe parent-reported HRQoL of children with ALL over a 5-year period from diagnosis and identify risk factors associated with parent reporting of low HRQoL in children. METHODS: Through a national longitudinal prospective study, we invited parents of children diagnosed with ALL within the last 100 days to report the HRQoL impacts on their child over time using the PedsQL Cancer Module. Mixed models were used to identify predictors of HRQoL. RESULTS: In total, 190 parents participated at one or more time points (representing children with a mean age of 6.2 years). Parents reported clinically meaningful reductions in their child's HRQoL throughout ALL treatment: Within the first 6 months of diagnosis, 59.2% of parents reported that their child had reduced HRQoL and 47.6% did at 54 months. Procedural anxiety and cognitive dysfunction were key contributors to HRQoL through and beyond treatment. Age at diagnosis, sex and rurality were associated with HRQoL. CONCLUSION: Almost half of parents reported that their children experienced poor HRQoL during and after treatment. Procedural anxiety and cognitive dysfunction were key contributors to HRQoL that did not reduce with time, demonstrating the need for comprehensive assessment of children's HRQoL to support access to psychosocial supportive care needs and improve overall HRQoL into survivorship years.