title: Patient-reported outcome measures in pediatric epilepsy: a content analysis using World Health Organization definitions.
abstract: OBJECTIVE
  Patient-reported outcome (PRO) measures that assess the effect of epilepsy on children's lives include the concepts of health, health-related quality of life (HRQOL), and quality of life (QOL). They also contain varied health and health-related content. Our objectives were to identify what generic and epilepsy-specific PRO instruments are used in childhood epilepsy research and to make explicit their conceptual approach and biopsychosocial content.
  
  
  METHODS
  MEDLINE, EMBASE, and PsycINFO were searched from 2001 to 2011 for PRO measures used in pediatric epilepsy. Measures were analyzed on an item-by-item basis according to World Health Organization (WHO) definitions of QOL and the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) biopsychosocial health framework to distinguish the conceptual approach within each measure. The health content analysis coded each item according to specific ICF-CY components of body function, activity and participation, environment, or personal factors to determine the health content for each measure.
  
  
  RESULTS
  Three generic and 13 epilepsy-specific PRO measures were identified; 10 of 16 measures utilized a biopsychosocial health approach rather than an HRQOL or QOL approach. Content analysis showed that in 11 of 16 measures, >25% of the items represented participation and activity components of the ICF-CY, whereas a high proportion of environment items were found in only one epilepsy-specific measure.
  
  
  CONCLUSIONS
  This comprehensive review provides information aiding clinicians and researchers in the selection of the appropriate PRO instruments for children with epilepsy on the basis of content. Most epilepsy-specific and generic PROs use a biopsychosocial health approach as opposed to a subjective HRQOL/QOL approach to measurement. Clinicians and researchers must be aware of these concepts and content when intending to measure outcomes validly.
authors.affiliation: Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Salva
authors.initials: S
authors.lastname: Sadeghi
authors.forename: Nora
authors.initials: N
authors.lastname: Fayed
authors.forename: Gabriel M
authors.initials: GM
authors.lastname: Ronen
mesh_terms: D016208:Databases, Factual / Q000706:statistics & numerical data; D004185:Disability Evaluation; D004827:Epilepsy / Q000523:psychology*; D006304:Health Status; D006801:Humans; D063868:Patient Outcome Assessment; D010372:Pediatrics; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires; D014944:World Health Organization
keywords: Biopsychosocial health; Children; Epilepsy; ICF-CY; Quality of life; World Health Organization