title: Validation of the Neuro-QoL measurement system in children with epilepsy.
abstract: OBJECTIVE
  Children with epilepsy often face complex psychosocial consequences that are not fully captured by existing patient-reported outcome (PRO) measures. The Neurology Quality of Life Measurement System "Neuro-QoL" was developed to provide a set of common PRO measures that address issues important to people with neurologic disorders. This paper reports Neuro-QoL (anxiety, depression, interaction with peers, fatigue, pain, cognitive function, stigma, and upper and lower extremity functions) validation in children with epilepsy.
  
  
  METHODS
  Patients (aged 10-18years) diagnosed with epilepsy completed Neuro-QoL and legacy measures at time 1 (initial study visit) and 6-month follow-up. Internal consistency reliability was also evaluated. Concurrent validity was assessed by comparing Neuro-QoL measures with more established "legacy" measures of the same concepts. Clinical validity was evaluated by comparing mean Neuro-QoL scores of patients grouped by clinical anchors such as disease severity. Responsiveness of the Neuro-QoL from time 1 (initial study visit) to 6months was evaluated using self-reported change as the primary anchor.
  
  
  RESULTS
  Sixty-one patients (mean age=13.4years; 62.3% male, 75.9% white) participated. Most patients (64.2%) had been seizure-free in the 3months prior to participation, and seizure frequency was otherwise described as follows: 17.8% daily, 13.3% weekly, 35.6% monthly, and 33.3% yearly. All patients were taking antiepileptic drugs. Patients reported better function/less symptoms compared to the reference groups. Internal consistency (alpha) coefficients ranged from 0.76 to 0.87. Patients with different seizure frequencies differed on anxiety (p<.01) and cognitive function (p<.05). Compared to patients on polytherapy, those on monotherapy had better upper extremity scores (p<.05). Compared to those with localized seizures, those experiencing generalized seizures reported worse stigma (p<.05). Depression, anxiety, lower extremity, fatigue, pain, interaction with peers, and stigma also significantly discriminated patients with different levels of quality of life (p≤.05). All Neuro-QoL measures were significantly correlated with other measures assessing similar domains. Stigma was related to self-reported change in several areas of functioning but in sometimes unexpected directions.
  
  
  CONCLUSIONS
  The Neurology Quality of Life Measurement System is a valid and reliable assessment tool for children with epilepsy and can be used in research and clinical settings.
authors: Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA; Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: js-lai@northwestern.edu.
authors: Jin-Shei
authors: JS
authors: Lai
authors: Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA; Department of Neurology, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: c-nowinski@northwestern.edu.
authors: Cindy J
authors: CJ
authors: Nowinski
authors: Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA; Department of Psychiatry and Behavioral Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: fzelko@luriechildrens.org.
authors: Frank
authors: F
authors: Zelko
authors: Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: kwortman@northwestern.edu.
authors: Katy
authors: K
authors: Wortman
authors: Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: james-l-burns@northwestern.edu.
authors: James
authors: J
authors: Burns
authors: Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA. Electronic address: DNordli@luriechildrens.org.
authors: Douglas R
authors: DR
authors: Nordli
authors: Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: d-cella@northwestern.edu.
authors: David
authors: D
authors: Cella
mesh_terms: D000293:Adolescent; D002648:Child; D004827:Epilepsy / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D011569:Psychiatric Status Rating Scales / Q000592:standards*; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results
keywords: Children; Epilepsy; Measurement; Neuro-QoL; Quality of life