Pediatric Quality of Life Inventory (PedsQL) in Fragile X Syndrome.
Sarah E Fitzpatrick, Lauren M Schmitt, Ryan Adams and 7 others
PMID 31728808WHAT IT FOUND
Parents rated quality of life in Fragile X syndrome highest for physical functioning and lowest for cognitive functioning.
Better child school and cognitive functioning were linked to better caregiver and family quality of life.
Key findings
01Parents rated children's quality of life highest in physical functioning and lowest in cognitive functioning.
02Caregiver and family quality of life were most closely tied to children's school functioning and least closely tied to physical functioning.
03Parents of older children reported higher school and cognitive functioning, and higher caregiver and family quality of life.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The online survey did not confirm Fragile X diagnoses. Only parent reports were collected, so the study did not capture the child's own view. There was no comparison group of children without Fragile X or with other conditions. The survey did not record comorbid medical conditions, other functioning measures, or treatment details that could affect quality of life. Most children were male, so findings may apply less well to females. The authors say further work is needed to establish the reliability, validity, and structure of the PedsQL in Fragile X. The authors note the PedsQL focuses on functioning and problem wording, which may not fully equal quality of life.
Declared interests
The authors reported no financial or other conflict related to the manuscript. The National Fragile X Foundation helped distribute the survey email. The supplied text does not state a funding source.
The easy way to misread this
Do not treat the PedsQL as a validated outcome measure for Fragile X syndrome. The authors describe this as pilot work and say more testing of consistency and validity is needed.