Disparity of child/parent-reported quality of life in cerebral palsy persists into adolescence

Aim: To examine the evolution of child–parent discrepancy in reporting quality of life (QoL) between childhood and adolescence in children with cerebral palsy (CP) and to investigate potential factors associated with such a discrepancy. Method: We used data from the SPARCLE (Study of PARticipation of Children with CP Living in Europe) study, a population-based cohort study of children with CP, aged 8 to 12 years at baseline (in 2004–2005), in nine European centres, who were followed up at the age of 13 to 17 years. The KIDSCREEN-52 Quality of Life measure was used at baseline and follow-up; 354 child–parent dyads out of 500 eligible dyads were followed up (201 males, 153 females). We used intraclass correlation coefficients (ICCs) to examine agreement between parent proxy-reports and self-reported QoL. We used linear regression to examine factors associated with child–parent discrepancy in QoL reporting. Results: Agreement was low to moderate (ICC=0.16–0.48) in childhood and in adolescence across all QoL domains. In four domains (moods and emotions, self-perception, relationship with parents and home life, and social support and peers), the extent of the discrepancy increased significantly between childhood and adolescence. Parenting stress, child pain, and child behaviour problems influenced parent proxy-reports during both childhood and adolescence. Interpretation: The points of view of the child and their parents should be treated as complementary to obtain better knowledge regarding the QoL of children and adolescents with CP.