Development, psychometric evaluation, and factor analysis of an instrument measuring quality of life in autistic preschoolers

IntroductionEarly interventions for autistic children should target their quality of life (QoL) but require adapted measures. The association of a child's temperament and parental characteristics with the QoL of autistic children remains unknown.MethodsWe constructed an autism module based on a thematic analysis, a Delphi survey with experts, and a pre-test with parents to be completed alongside the proxy version of the PedsQL 4.0. We explored compliance, responsiveness, internal consistency, convergent validity, and factor structure with 157 parents of autistic preschool children. We examined the association between child and parental characteristics with the QoL of autistic children using correlation analysis, principal component analysis, hierarchical ascending classification, and linear regression. Sociodemographic information was collected via multiple choice questions, autism severity via Autism Diagnostic Observation Schedule (ADOS) scores, and parental acceptance and child's temperament via the Acceptance and Action Questionnaire and the Emotionality, Activity, and Sociability.ResultsAn autism module comprised of 27 items emerged. Psychometric evaluation resulted in a 24-item autism module with good internal consistency and significant convergent validity. ADOS total score was not significantly related to QoL, contrary to children's sleep issues, children's emotionality, and parental acceptance.ConclusionsThe autism module is a reliable QoL proxy measure for autistic preschool children. Results suggest parental interventions targeting children's QoL.