Health-related quality of life from the perspective of children with severe specific language impairment

BACKGROUND: This study aimed to evaluate the feasibility and reliability of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales (PedsQL™) for use by children with severe specific language impairment (SLI) and their parent, and to explore the health-related quality of life of children with severe SLI. We hypothesized that the PedsQL™ would be a suitable measure, and identify lower health-related quality of life compared to the healthy population sample, particularly in school and social functioning. METHODS: Forty-three out of 61 children with severe SLI enrolled at a dedicated school from February 2010 until September 2011 agreed to participate. Children and parents completed the PedsQL™ separately with support as required. RESULTS: The PedsQL™ proved to be suitable for this cohort. Children perceived themselves to be at risk of impaired social and physical functioning, rendering the total score below the population mean. Parents rated social and emotional functioning at risk of impairment, with the psychosocial and total summary score consequently below the population mean. Physical functioning had the largest child/parent difference, with children rating themselves below the cut-off score, and parents rating their children above the cut-off score. CONCLUSIONS: This measure can be used with this group. Our group of children with severe SLI reported lower health-related quality of life than the healthy population mean as perceived by both the child and the parent. Health professionals working with children who have SLI need to consider not only a child’s impairment, but also their wellbeing and participation by incorporating self- and proxy-reports into assessment in order to promote meaningful therapeutic outcomes that impact positively on a child’s life.