title: Neuro-QoL health-related quality of life measurement system: Validation in Parkinson's disease.
abstract: Neuro-QoL is a multidimensional patient-reported outcome measurement system assessing aspects of physical, mental, and social health identified by neurology patients and caregivers as important. One of the first neurology-specific patient-reported outcome measure systems created using modern test development methods, Neuro-Qol enables brief, yet precise, assessment and the ability to conduct both PD-specific and cross-disease comparisons. We present results of Neuro-QoL clinical validation using a sample of PD patients.
  
  
  
  A total of 120 PD patients recruited from academic medical centers were assessed at baseline, 1 week, and 6 months. Assessments included Neuro-QoL and general and PD-specific validity measures.
  
  
  
  Participants were 62% male and 95% white (average age = 66); H & Y stages were 1 (16%), 2 (61%), 3 (18%), and 4 (5%). Internal consistency and test-retest reliability of Neuro-QoL ranged from Cronbach's alphas = 0.81 to 0.94 with intraclass correlation coefficients = 0.66 to 0.80. Pearson's correlations between Neuro-QoL and legacy measures were generally moderate and in expected directions. UPDRS Part 2 was moderately correlated with Neuro-QoL Upper Extremity and Mobility, respectively (r's = -0.44; -0.59). Parkinson's Disease Questionnaire-39 and Neuro-QoL measures of similar constructs showed strong-to-moderate correlations (r's = 0.70-0.44). Neuro-QoL measures of fatigue, mobility, positive emotion, and emotional/behavioral control showed responsiveness to self-reported change.
  
  
  
  Neuro-QoL is valid for use in PD clinical research. Reliability for all but two measures is sufficient for group comparisons, with some evidence supporting responsiveness to change. Neuro-QoL possesses characteristics, such as brevity, flexibility in administration, and suitability, for cross-disease comparisons that may be advantageous to users in a variety of settings. © 2016 Movement Disorder Society.
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.|Department of Neurology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
authors.forename: Cindy J
authors.initials: CJ
authors.lastname: Nowinski
authors.affiliation: Avid Radiopharmaceuticals, Philadelphia, Pennsylvania, USA.
authors.forename: Andrew
authors.initials: A
authors.lastname: Siderowf
authors.affiliation: Department of Neurology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
authors.forename: Tanya
authors.initials: T
authors.lastname: Simuni
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
authors.forename: Catherine
authors.initials: C
authors.lastname: Wortman
authors.affiliation: National Institute of Neurological Disorders and Stroke, Bethesda, Maryland, USA.
authors.forename: Claudia
authors.initials: C
authors.lastname: Moy
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
authors.forename: David
authors.initials: D
authors.lastname: Cella
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease; D000071066:Patient Reported Outcome Measures; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life; D015203:Reproducibility of Results
keywords: Parkinson's disease; assessment; health-related quality of life; patient-reported outcomes