Factors affecting the health-related quality of life of children with cerebral palsy in Indonesia: a cross-sectional study

Abstract

Purpose: Children with cerebral palsy (CP) and their parents experience various problems that can affect their quality of life. This study examined factors affecting the quality of life of children with CP.Methods: A cross-sectional study was conducted in Yogyakarta, Indonesia, from January to August 2019. The participants were consecutively recruited children with CP aged 2 to 18 years and their parents. Ninety-eight children with CP and their parents, specifically their mothers, were recruited. Children’s health-related quality of life (HRQoL) was measured using the Pediatrics Quality of Life Cerebral Palsy. Parental HRQoL and stress were measured using the WHOQOL-BREF and Parenting Stress Index (PSI).Results: Functional level V was the most common category for both Gross Motor Function Classification System (GMFCS) and Bimanual Fine Motor Function (BFMF) (35% and 28%, respectively). Children’s mean HRQoL was medium (49.81±20.35). The mean total PSI score was high (94.93±17.02), and 64% of parents experienced severe stress. Bivariate analysis showed that GMFCS, BFMF, number of comorbidities, presence of pain, and parental stress were significantly correlated with the total score for children’s HRQoL (p<.05). Multiple linear regression analysis (p<.05) demonstrated that more severe GMFCS and parental stress were associated with lower mean HRQoL scores in children.Conclusion: Factors including the level of GMFCS and parental stress affected the HRQoL of children with CP. Parental stress management should be included in the comprehensive management of these children.