Developing an instrument to assess vision‐related and subjective quality of life in children with intellectual disability: data collection and preliminary analysis in a Chinese population

Visual abnormalities are common in children and adolescents with intellectual disability, but it is not known whether these abnormalities impact on their quality of life. As a first step towards addressing this question, this study collects self-perceptions on visual performance and life quality in school children with intellectual disability.Questionnaires were modified from those used to assess vision- and health-related quality of life in children with normal development, with guidance from a focus group of individuals who work or live with children with intellectual disability. The survey was conducted in a population of Chinese children with intellectual disability, using self-completion and caregivers' responses.Responses from subjects showed comparable dimensions in vision-related quality of life to those revealed by previous studies in children with normal development. Some differences were apparent, however, and possible explanations for these are discussed. Our results showed good internal consistency and correlations between subscales within and across questionnaires.The assessment of vision-related quality of life is feasible in children and adolescents with at least mild-to-moderate intellectual disability. In this population of children with intellectual disability, perceived visual function is associated with quality of life.