Jin Shei Lai|Cindy J. Nowinski|David Victorson|Rita Bode|Tracy Podrabsky|Natalie McKinney|Don D. Straube|Gregory L. Holmes|Craig M. McDonald|Erik Henricson|Richard T. Abresch|Claudia S. Moy|David Cella
Quality-of-Life Measures in Children With Neurological Conditions
Northwestern University|Northwestern University|Northwestern University|Northwestern University|Northwestern University|Northwestern University|University of Illinois at Chicago|Dartmouth College|University of California Davis Medical Center|University of California Davis Medical Center|University of California Davis Medical Center|National Institute of Neurological Disorders and Stroke|Northwestern University
comprehensive reliable valid measurement system needed monitor changes children neurological conditions experience lifelong functional limitationsthis article describes development psychometric properties pediatric version quality life neurological disorders neuroqol measurement systemthe pediatric neuroqol consists generic targeted measures literature review focus groups individual interviews cognitive interviews children consensus meetings used identify finalize relevant domains item content testing conducted 1018 children aged 10 17 years drawn us general population generic measures 171 similarly aged children muscular dystrophy epilepsy targeted measures dimensionality evaluated using factor analytic methods unidimensional domains item parameters estimated using item response theory models measures acceptable fit indices calibrated item banks without acceptable fit indices treated summary scalesten measures developed 8 generic targeted banks anxiety depression anger interaction peers fatigue pain applied cognition stigma 2 generic scales upper lower extremity function banks reliably r 090 measured 632 100 children testedthe pediatric neuroqol comprehensive measurement system acceptable psychometric properties could used computerized adaptive testing next step validate measures various clinical populations