Quality of life in children with Prader Willi Syndrome: Parent and child reports.
The PedsQL 4.0 is a quick, trustworthy way to spot low quality of life in school-age clients with Prader-Willi syndrome.
01Research in Context
What this study did
The team gave the PedsQL 4.0 to school-age children with Prader-Willi syndrome and to their parents.
They also gave the same form to obese children without PWS.
The goal was to see if the PedsQL could track quality of life in PWS and to compare scores.
What they found
Children with PWS scored lower on quality of life than the obese group.
Parents of kids with PWS rated their child’s life quality even lower than the children did themselves.
The PedsQL still showed reliable numbers, so the tool works for this group.
How this fits with other research
Zyga et al. (2020) extends these results by showing that parents of preschoolers with PWS already feel high stress and have tougher interactions.
Granieri et al. (2020) and Libero et al. (2016) ran similar checks on other tools—KidsLife-ASD and KidsLife—for kids with autism or ID and also found the scales reliable.
Wong et al. (2009) helps explain the low scores: sudden routine changes can spark temper outbursts in PWS, likely dragging quality-of-life ratings down.
Why it matters
You now have a quick, valid parent-and-child form that flags lower life quality in PWS.
Use it at intake and after interventions to see if behavior plans or family support really help the child—and the parents—feel better day to day.
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02At a glance
03Original abstract
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.
Research in developmental disabilities, 2016 · doi:10.1016/j.ridd.2016.06.016