Proxy- and self-report evaluation of quality of life in cerebral palsy: Using Spanish version of CPQOL for Children and adolescents

Abstract

[EN]Background Promoting quality of life (QoL) is one of the main goals in interventions carried out with children and adolescents with cerebral palsy (CP). Aims The aim of this study was to analyze the determinants of QoL in children with CP, including evaluations by the children themselves and their parents, and to identify discrepancies between evaluators. Methods and procedures The adapted Spanish version of the Cerebral Palsy Quality of Life (CP-QOL) for children and adolescents (self-report and primary caregiver-reports versions) was applied to a sample of 74 children with CP and their respective parents (totaling 222 participants), as well as instruments to measure functioning (i.e., GMFCS, MACS, CFCS and EDACS). The average age of the children was 12.50 (SD=4.07), with a higher number of boys (55.7 %). Outcomes and results The lowest QoL levels were found in the Functional dimension in both assessments (Mchildren/adolescents=70.21, Mparents=58.14). For children, the highest rated dimension was Social Well-being (M=74.54), while for parents it was School (M=71.03). The degree of agreement between evaluators was low in almost all dimensions (ICC≤.40). More satisfactory predictive models were constructed from the evaluations carried out by parents, except in the case of the Access to Services dimension, with functioning measures being the main predictors of QoL levels. Conclusions and implications The CP-QOL in its two available versions is a useful and specific instrument for assessing QoL in children with CP in both research and professional fields.