title: The neurology quality-of-life measurement initiative.
abstract: OBJECTIVE
  To describe the development and calibration of the banks and scales of the Quality of Life in Neurological Disorders (Neuro-QOL) project, commissioned by the National Institute of Neurological Disorders and Stroke to develop a bilingual (English/Spanish), clinically relevant, and psychometrically robust health-related quality-of-life (HRQOL) assessment tool.
  
  
  METHODS
  Classic and modern test construction methods were used, including input from essential stakeholder groups.
  
  
  METHODS
  An online patient panel testing service and 11 academic medical centers and clinics from across the United States and Puerto Rico that treat major neurologic disorders.
  
  
  METHODS
  Adult and pediatric patients representing different neurologic disorders specified in this study, proxy respondents for select conditions (stroke, pediatric conditions), and English- and Spanish-speaking participants from the general population.
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  Multiple generic and condition-specific measures used to provide construct validity evidence for the new Neuro-QOL tool.
  
  
  RESULTS
  Neuro-QOL has developed 14 generic item banks and 8 targeted scales to assess HRQOL in 5 adult (stroke, multiple sclerosis, Parkinson's disease, epilepsy, amyotrophic lateral sclerosis) and 2 pediatric conditions (epilepsy, muscular dystrophies).
  
  
  CONCLUSIONS
  The Neuro-QOL system will continue to evolve, with validation efforts in clinical populations and new bank development in health domains not presently included. The potential for Neuro-QOL measures in rehabilitation research and clinical settings is discussed.
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA. d-cella@northwestern.edu
authors.forename: David
authors.initials: D
authors.lastname: Cella
authors.forename: Cindy
authors.initials: C
authors.lastname: Nowinski
authors.forename: Amy
authors.initials: A
authors.lastname: Peterman
authors.forename: David
authors.initials: D
authors.lastname: Victorson
authors.forename: Deborah
authors.initials: D
authors.lastname: Miller
authors.forename: Jin-Shei
authors.initials: JS
authors.lastname: Lai
authors.forename: Claudia
authors.initials: C
authors.lastname: Moy
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002138:Calibration; D004185:Disability Evaluation; D005260:Female; D017144:Focus Groups; D006801:Humans; D007256:Information Systems; D008297:Male; D008875:Middle Aged; D009316:National Institutes of Health (U.S.); D009422:Nervous System Diseases / Q000534:rehabilitation*; D017063:Outcome Assessment, Health Care; D011594:Psychometrics; D011647:Puerto Rico; D011788:Quality of Life; D012650:Self Disclosure; D011795:Surveys and Questionnaires; D014481:United States