Quality of life of adolescents with autism spectrum disorders: concordance among adolescents' self-reports, parents' reports, and parents' proxy reports

Purpose To compare adolescent self-reports with two types of parent reports regarding the quality of life (QoL) of adolescents with Autism Spectrum Disorders (ASDs): (1) standard parent reports, in which parents give their own perspective on their adolescent child's QoL and (2) parent proxy reports, in which parents indicate how they believe their adolescent child would answer. Methods Thirty-nine adolescents with ASDs and their parents completed the Pediatric Quality of Life Inventory (PedsQL). Parents completed the form twice, once using standard parent report instructions and again using proxy instructions. Concordance among the three reports was evaluated via Pearson correlations. Differences in means were assessed via ANOVAs. Results Correlations were higher between parent proxy reports and adolescent self-reports than between standard parent reports and adolescent self-reports. In addition, average scores on the parent proxy reports were closer to adolescents' self-reports than were average scores on the standard parent reports. Conclusions These results demonstrate that parents of adolescents with ASDs have different opinions about their children's quality of life than their children do, and that they are aware of these differences. If the goal is to reduce discrepancy between the reports of parents and their adolescent children with ASDs, it may be advisable to ask parents to report on their child's QoL as they believe their children would.