Quality of life in children with Prader Willi Syndrome: Parent and child reports

Purpose: The purpose of this study was to evaluate the use of the Peds QL4.0 instrument to assess quality of life (QL) in children with Prader Willi Syndrome (PWS). This study also sought to compare differences in parent and child report as well as between children with PWS and without PWS.

Methods: Parents and children with PWS (N=44) completed the PedsQL 4.0 instrument. A sub-sample of children completed the Peds QL 4.0 a second time to assess test-retest reliability. A comparison sample of children who were obese but without PWS (N=66) also completed the PedsQL 4.0.

Results: PedsQL 4.0 showed acceptable internal consistency for the child report (αs >0.72) and was acceptable for 4 out of the 6 scales for the parent report (αs >0.66). Test-retest reliability coefficients showed support for the reliability of the instrument (ICCs>0.64). Parents perceived lower QL than children with PWS. Children with PWS also showed lower QL than children without PWS.

Conclusions: This study provides support for the use of the PedsQL 4.0 instrument in children with PWS. As observed in other populations, parents perceive a lower QL for their children with PWS than the children themselves.