Factors associated with Change in Quality of Life and Family Functioning Scores of Parental Caregivers of Children and Young People with Primary Brain Tumour in Karachi, Pakistan: A Prospective Cohort Study

Abstract

Abstract Background There are limited data available, particularly in low- and middle-income countries (LMICs), on long-term quality of life (QoL) and family functioning of parental caregivers to children and young people (CYP) affected by primary brain tumours (PBTs). This study aimed to assess the factors associated with mean change in QoL and family functioning scores of parental caregivers of CYP with PBTs 12 months post-treatment. Methods This prospective cohort study enrolled CYP aged 5–21 years with newly diagnosed PBTs and their parental caregivers. The study was carried out between November 2020 and July 2023. The responding parental caregivers (mothers) were recruited from the two major tertiary care centers in Karachi, Pakistan. The parental QoL was assessed by the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. The assessment was undertaken by a psychologist at the time of the diagnosis and 12 months post-treatment. The data were analyzed by STATA version 12. Results Forty-eight CYP with newly diagnosed PBTs and their mothers were enrolled. At 12-month post-treatment 25 (52%) of CYP and their mothers were reassessed and 23 (48%) were lost to follow-up. On multivariable analysis, a significant decline in mothers’ mean 12-month post-treatment QoL and family functioning scores were associated with CYP having post-treatment seizures (beta= -10.2; 95% CI: -18.4 to -2.0) and financial burden associated with the CYP’s illness (beta= -0.3; 95% CI: -0.4 to -0.1). However, in those cases where CYP had higher post-treatment quality of life scores (beta = 0.4; 95% CI: 0.1, 0.6) and post-treatment higher verbal intelligence scores (beta = 0.1; 95% CI: 0.01, 0.3), the QoL and family functioning scores of the mothers were significantly increased. Conclusion We found a significant decline in maternal QoL where there was a high financial burden and whose CYP had post-treatment seizures. However, those who’s CYP had higher post-treatment verbal intelligence scores and quality of life scores had a significant increase in their QoL scores. Identification of the factors that influence parental QoL has the potential to enable the development of targeted strategies to alleviate stressors and improve the overall quality of life for mothers and their children who are at high risk.