Predictors of individual quality of life in young people with down syndrome

Abstract

Objective: Although the concept of quality of life (QoL) has become a reference framework for the provision of support and services to people with intellectual disability (ID), its conceptualization and application for persons with Down syndrome (DS) has received little attention. This study analyzes QoL outcomes in children and young people with DS and examines the influence of several individual and environmental variables on QoL. Research method: A cross-sectional study was conducted. Participants were 404 children and young people with DS aged 4 to 21 who were users of 73 organizations providing services to people with ID. The KidsLife-Down Scale was used to assess QoL-related personal outcomes perceived by professionals and relatives. Descriptive statistics were calculated. Correlation coefficients were computed and multiple regression analyses were conducted for each QoL domain and for the composite score. Results: The highest scores were obtained in material wellbeing, physical wellbeing, and rights, whereas the lowest scores were observed in self-determination and social inclusion. Multiple regression analyses showed that age, level of ID, level of support needs, degree of dependency, type of schooling, and size of organization were predicting factors of scores in QoL domains. Conclusions: This study underlines priority areas and relevant variables that must be considered when planning, implementing, and assessing supports and services to improve the QoL of children and young people with DS.