Quality of life and family functioning 12 months after diagnosis of childhood brain tumour: A longitudinal cohort study

Background: The wellbeing of a child with brain tumour is affected by several factors. We present the first investigation of quality of life and family functioning in a parent and child across the first 12 months after diagnosis, examining potential factors to guide the provision of psychosocial resources to families who most need them. Procedure: Data were collected from parents/carers in Queensland, Australia, from 2020 to 2023. Child (parent/carer-proxy reported) and carer quality of life was assessed across three timepoints (repeated measures analysis of variance [ANOVA]) and by five potential co-variates (mixed between-within ANOVA). Family functioning was assessed across two timepoints (repeated-measures t-test), and by potential co-variates (repeated measures ANOVA). Univariate relationships were explored with Pearson's correlation coefficient; significant relationships were entered into multiple regression models. Results: Ninety-six diverse families were represented. Quality of life (child, carer) and family functioning did not change across time. Children from households with lower income reported worse cognitive difficulties (p =.023) and pain and hurt (p =.013) than those from a higher income. Caregiver quality of life was poorer for those whose child had received chemotherapy and/or radiation, was aged less than 4 years at diagnosis, and had a lower household income. At 12 months, caregiver quality of life was correlated with family functioning (r = −.45, p <.001), with positive adaptation being a significant key predictor (beta = −.66, p <.005). Conclusions: The following factors indicate a need for increased early psychosocial support: cognitive difficulties, aged <4 years at diagnosis, receiving chemotherapy and/or radiation, and low household income.