title: Validating Neuro-QoL short forms and targeted scales with people who have multiple sclerosis.
abstract: Multiple sclerosis (MS) is a chronic, progressive, and disabling disease of the central nervous system with dramatic variations in the combination and severity of symptoms it can produce. The lack of reliable disease-specific health-related quality of life (HRQL) measures for use in clinical trials prompted the development of the Neurology Quality of Life (Neuro-QOL) instrument, which includes 13 scales that assess physical, emotional, cognitive, and social domains, for use in a variety of neurological illnesses.
  
  
  
  The objective of this research paper is to conduct an initial assessment of the reliability and validation of the Neuro-QOL short forms (SFs) in MS.
  
  
  
  We assessed reliability, concurrent validity, known groups validity, and responsiveness between cross-sectional and longitudinal data in 161 recruited MS patients.
  
  
  
  Internal consistency was high for all measures (α = 0.81-0.95) and ICCs were within the acceptable range (0.76-0.91); concurrent and known groups validity were highest with the Global HRQL question. Longitudinal assessment was limited by the lack of disease progression in the group.
  
  
  
  The Neuro-QOL SFs demonstrate good internal consistency, test-re-test reliability, and concurrent and known groups validity in this MS population, supporting the validity of Neuro-QOL in adults with MS.
authors.affiliation: Mellen Center, Cleveland Clinic, USA millerd@ccf.org.
authors.forename: Deborah M
authors.initials: DM
authors.lastname: Miller
authors.affiliation: Mellen Center, Cleveland Clinic, USA.
authors.forename: Francois
authors.initials: F
authors.lastname: Bethoux
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA.
authors.forename: David
authors.initials: D
authors.lastname: Victorson
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA.
authors.forename: Cindy J
authors.initials: CJ
authors.lastname: Nowinski
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA.
authors.forename: Sarah
authors.initials: S
authors.lastname: Buono
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA.
authors.forename: Jin-Shei
authors.initials: JS
authors.lastname: Lai
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA.
authors.forename: Katy
authors.initials: K
authors.lastname: Wortman
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA.
authors.forename: James L
authors.initials: JL
authors.lastname: Burns
authors.affiliation: Office of Clinical Research, National Institute of Neurological Disorders and Stroke (NINDS), USA.
authors.forename: Claudia
authors.initials: C
authors.lastname: Moy
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA.
authors.forename: David
authors.initials: D
authors.lastname: Cella
mesh_terms: D000328:Adult; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000175:diagnosis*; D000071066:Patient Reported Outcome Measures; D011788:Quality of Life; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires / Q000592:standards
keywords: Neuro-QOL; health-related quality of life; multiple sclerosis; patient-reported outcomes