Pediatric Quality of Life Inventory (PedsQL) in Fragile X Syndrome

Sarah E Fitzpatrick, Lauren M Schmitt, Ryan Adams, Ernest V Pedapati, Logan K Wink, Rebecca C Shaffer, Jessica Sage, Jayne Dixon Weber, Kelli C Dominick, Craig A Erickson, Sarah E Fitzpatrick, Lauren M Schmitt, Ryan Adams, Ernest V Pedapati, Logan K Wink, Rebecca C Shaffer, Jessica Sage, Jayne Dixon Weber, Kelli C Dominick, Craig A Erickson

Abstract

To date, health related quality of life (QoL) has not been systematically evaluated in youth with fragile X syndrome (FXS), the most common single gene cause of autism and the most common inherited form of developmental disability. We describe QoL data gathered using the Pediatric Quality of Life Inventory (PedsQL) completed online by 364 parents of youth with FXS. Parents consistently reported across all gender and age groups that their children experienced the highest QoL in Physical functioning and the lowest QoL in Cognitive functioning. Overall, older children with FXS had increase QoL ratings in the domains of School and Cognitive function.

Keywords: Developmental disability; Fragile X syndrome; Quality of life.

Conflict of interest statement

Conflict of interest No authors have a conflict financially or otherwise related to the content of this manuscript.

Figures

Fig. 1
Fig. 1
Bar graphs depicting the means for males and females for each of the five dimensions of HRQoL
Fig. 2
Fig. 2
Bar graphs depicting the means for 5 to 10 years old participants and 11 to 17 years old participants for each of the five dimensions of HRQoL

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Source: PubMed

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