Disparities in Quality of Life and Family Functioning 24 Months After Diagnosis of a Childhood Brain Tumour: A Longitudinal Cohort Study

Abstract

BACKGROUND: Increases in survival for childhood brain tumour are evidence of improved care; however, survival is not the only outcome that matters. There has been little scholarly investigation into the psychosocial wellbeing of the diagnosed child and their parents/carers (caregivers) in the early years after diagnosis-fewer still have considered indicators for increased early support. The aim of the present study was to explore whether child and caregiver quality of life (QoL), and family functioning, change over the first 24 months post-diagnosis, and whether this varies by clinical and sociodemographic factors. PROCEDURE: Ninety-six caregivers were recruited less than 3 months after their child was diagnosed to complete surveys at five time points. Outcome measures were child QoL (caregiver-proxy), caregiver QoL, and family functioning; linear mixed models with random intercepts were used to assess predictors for each. RESULTS: Child and caregiver QoL did not improve with time, nor did family functioning. Those with a child who had a low-grade tumour at baseline who received chemotherapy and/or radiation consistently reported the worst QoL for themselves and their child. Household income was a predictor of all outcomes-those with a lower income (<AU$70,000) reported worse experiences. CONCLUSIONS: Time alone may not improve QoL and family functioning. Psychosocial support must be provided to all children with a brain tumour and their families, regardless of tumour grade. Families who have a child diagnosed with any brain tumour and who have a lower household income would likely benefit from intensive psychosocial support from diagnosis and beyond.