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

ABSTRACT

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.