Article

A comprehensive, reliable, and valid measurement system is needed to
monitor changes in children with neurological conditions who experience lifelong
functional limitations. This article describes the development and
psychometric properties of the pediatric version of the Quality of Life in
Neurological Disorders (Neuro-QOL) measurement system. METHODS: The pediatric
Neuro-QOL consists of generic and targeted measures. Literature review, focus
groups, individual interviews, cognitive interviews of children and consensus
meetings were used to identify and finalize relevant domains and item content.
Testing was conducted on 1018 children aged 10 to 17 years drawn from the US
general population for generic measures and 171 similarly aged children with
muscular dystrophy or epilepsy for targeted measures. Dimensionality was
evaluated using factor analytic methods. For unidimensional domains, item
parameters were estimated using item response theory models. Measures with
acceptable fit indices were calibrated as item banks; those without acceptable
fit indices were treated as summary scales. RESULTS: Ten measures were developed:
8 generic or targeted banks (anxiety, depression, anger, interaction with peers,
fatigue, pain, applied cognition, and stigma) and 2 generic scales (upper and
lower extremity function). The banks reliably (r > 0.90) measured 63.2% to 100%
of the children tested. CONCLUSIONS: The pediatric Neuro-QOL is a comprehensive
measurement system with acceptable psychometric properties that could be used in
computerized adaptive testing. The next step is to validate these measures in
various clinical populations.

Langue : ANGLAIS