An Exploratory Study of Self-reported Quality of Life in Children with Autism Spectrum Disorder and Intellectual Disability

Abstract

We examined the content validity of the Pediatric Quality of Life Inventory™ Young Child Self-report (PedsQL™-YC) in children with autism spectrum disorder (ASD) and intellectual disability and made recommendations for the development of a quality of life (QOL) measure. Ten children, 14 parents, and three teachers were recruited for focus groups and interviews. Focus groups and interviews were conducted to obtain their perceptions about the appropriateness of the PedsQLTM-YC (Phase 1). Based on the results from Phase 1, recommendations for a QOL measure for children with ASD and intellectual disability were made (Phase 2). After piloting a QOL measure by children and subsequent interviews, further refinement was undertaken (Phase 3). Data from Phases 1 and 3 were analysed using thematic and content analyses. Findings suggest that a QOL measure for children with ASD and intellectual disability should be related specifically to the children’s daily life and contexts. Due to the specific cognitive and behavioural characteristics of this population, the wording, response options and presentation style of the existing PedsQL™-YC would need refinement. Questions about social interactions with friends appeared less relevant to children with ASD. These recommendations address the wording and formatting issues needed for a QOL measure for use in children with ASD and intellectual disability identified through qualitative research methods. Further research is needed to include additional or modified questions in the social domain.