Calidad de vida en ni os y adolescentes con parálisis cerebral

Objective: To evaluate quality of life (QoL) of children and adolescents with cerebral palsy (CP) according to the perception of the children themselves and their parents, examining the degree of agreement between the two perceptions, and identify the variables that influence QoL. Methods: We conducted a cross-sectional study that included 92 children and adolescents with CP (aged 8-18 years) without other associated comorbidities in ASPACE monitoring centers of the Autonomous Community of Castile and León - Spain. The process of data collection was conducted between October 2008 and September 2009 and the assessment instrument used was the Spanish version of Kidscreen. Statistical analyzes included t tests, intraclass correlation coefficient (ICC) and multiple linear regression. Results: The QoL scores were low in almost all areas of the Kidscreen. The variables of children determined the results of QoL in the “economic resources” and “psychological well-being.” The variable Gross Motor Function Classification System (GMFCS) explained only 7% of the variation of the domain “physical well-being,” while the “degree of intellectual disability” (ID) explained 14% of the variation of the domain “psychological well-being.” Parents underestimate the QoL of their children in 9 of the 10 domains and intraclass correlation coefficient (ICC) was high only in the “friends and social support.” Conclusion: The results draw attention to the importance of listening to children and adolescents with CP, because their perception of QoL may be different from what their parents have.