title: Quality-of-life measures in children with neurological conditions: pediatric Neuro-QOL.
abstract: BACKGROUND
  A comprehensive, reliable, and valid measurement system is needed to monitor changes in children with neurological conditions who experience lifelong functional limitations.
  
  
  OBJECTIVE
  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.
authors.affiliation: Department of Medical Social Sciences, Feinberg School of Medicine at Northwestern University, Chicago, IL 60611, USA. js-lai@northwestern.edu
authors.forename: Jin-Shei
authors.initials: JS
authors.lastname: Lai
authors.forename: Cindy
authors.initials: C
authors.lastname: Nowinski
authors.forename: David
authors.initials: D
authors.lastname: Victorson
authors.forename: Rita
authors.initials: R
authors.lastname: Bode
authors.forename: Tracy
authors.initials: T
authors.lastname: Podrabsky
authors.forename: Natalie
authors.initials: N
authors.lastname: McKinney
authors.forename: Don
authors.initials: D
authors.lastname: Straube
authors.forename: Gregory L
authors.initials: GL
authors.lastname: Holmes
authors.forename: Craig M
authors.initials: CM
authors.lastname: McDonald
authors.forename: Erik
authors.initials: E
authors.lastname: Henricson
authors.forename: R Ted
authors.initials: RT
authors.lastname: Abresch
authors.forename: Claudia S
authors.initials: CS
authors.lastname: Moy
authors.forename: David
authors.initials: D
authors.lastname: Cella
mesh_terms: D000293:Adolescent; D000786:Anger; D001007:Anxiety / Q000209:etiology; D016022:Case-Control Studies; D002648:Child; D003071:Cognition; D003863:Depression / Q000209:etiology; D004827:Epilepsy / Q000150:complications* / Q000503:physiopathology / Q000523:psychology*; D005221:Fatigue / Q000209:etiology; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D009136:Muscular Dystrophies / Q000150:complications* / Q000503:physiopathology / Q000523:psychology*; D010146:Pain / Q000209:etiology; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life; D015203:Reproducibility of Results; D057545:Social Stigma; D011795:Surveys and Questionnaires