Generic preference-based health-related quality of life in children with neurodevelopmental disorders: a scoping review.
Ramesh Lamsal, Brittany Finlay, David G T Whitehurst and 1 others
PMID 31225644WHAT IT FOUND
Generic quality-of-life tools often miss key issues for children with neurodevelopmental disorders, like peer relations or school behaviour.
Parents and children also report different scores. These tools should not be used alone to judge treatment success or resource allocation.
Key findings
01Standard generic quality-of-life instruments frequently fail to capture domains critical to neurodevelopmental disorders, such as peer relations, school behaviour, and family functioning.
02There is no consensus on who should complete these measures; parents reported lower quality of life than children in four studies, and proxy use was common due to cognitive limitations.
03The overall quality of evidence is low, with many studies lacking explicit theoretical frameworks or validation of the instruments used for this specific population.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The review only included studies published in English and peer-reviewed journals, which may exclude relevant data. Only seven specific families of generic instruments were included, potentially missing other tools. The included studies themselves had low methodological quality, with many lacking validation of the instruments for the specific NDD populations. There was considerable variation in how health state values were calculated and reported, making direct comparisons difficult.
Declared interests
None reported in the provided text.
The easy way to misread this
Do not assume that a low generic quality-of-life score accurately reflects a child's functional ability or participation. These instruments often miss neurodevelopmental-specific issues, and proxy reports by parents may differ significantly from the child's own perspective.