Sociodemographic and clinical predictors of quality-of-life outcome in children and young people with primary brain tumour in Karachi, Pakistan: A prospective cohort study

Background Children and young people (CYP) with primary brain tumour (PBT) are at high risk for developing late effects, potentially affecting long-term quality of life (QoL). In low-income and middle-income countries, QoL has not been studied in depth in CYP. In the present study, CYP treated for PBTs in Pakistan were evaluated regarding (A) mean change in QoL scores pretreatment and 12 months post-treatment and (B) predictors of change in QoL scores 12 months post-treatment. Methods A prospective cohort study was conducted from November 2020 to July 2023. CYP aged 5-21 years, with newly diagnosed PBTs, were recruited from tertiary care centres in Karachi, Pakistan. QoL was assessed using the Paediatric Quality of Life Inventory 4 generic and brain tumour module, pretreatment and at 12 months post-treatment, by a trained psychologist. Results A total of 48 patients diagnosed with PBTs were enrolled in the study. At the 12-month post-treatment, 25 (52%) of the patients were reassessed, while 23 (48%) were lost to follow-up. There was no significant difference in mean global QoL scores of patients at 12 months post-treatment. On multivariable analysis, there was a statistically significant improvement in mean global QoL scores among those who underwent total surgical tumour resection (beta 7.7; 95% CI 0.9, 14.5) and maximum safe surgical tumour resection (beta 10.6; 95% CI 4.7, 16.6). However, there was a significant decline in mean global QoL scores among those who had hydrocephalous at diagnosis managed with a shunt and/or external ventricular drain (EVD) (beta -10.0; 95% CI -14.5, -5.5). Conclusion This study found a decline in mean global QoL scores among those with hydrocephalous at diagnosis who were managed with a shunt and/or EVD but an improvement in those who underwent total or maximum safe surgical tumour resection. Larger-scale studies are needed to comprehensively evaluate and validate these outcomes.