title: Agreement Between Responses From Community-Dwelling Persons With Stroke and Their Proxies on the NIH Neurological Quality of Life (Neuro-QoL) Short Forms.
abstract: OBJECTIVE
  To examine agreement between patient and proxy responses on the Quality of Life in Neurological Disorders (Neuro-QoL) instruments after stroke.
  
  
  METHODS
  Cross-sectional observational substudy of the longitudinal, multisite, multicondition Neuro-QoL validation study.
  
  
  METHODS
  In-person, interview-guided, patient-reported outcomes.
  
  
  METHODS
  Convenience sample of dyads (N=86) of community-dwelling persons with stroke and their proxy respondents.
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  Dyads concurrently completed short forms of 8 or 9 items for the 13 Neuro-QoL adult domains using the patient-proxy perspective. Agreement was examined at the scale-level with difference scores, intraclass correlation coefficients (ICCs), effect size statistics, and Bland-Altman plots, and at the item-level with kappa coefficients.
  
  
  RESULTS
  We found no mean differences between patients and proxies on the Applied Cognition-General Concerns, Depression, Satisfaction With Social Roles and Activities, Stigma, and Upper Extremity Function (Fine Motor, activities of daily living) short forms. Patients rated themselves more favorably on the Applied Cognition-Executive Function, Ability to Participate in Social Roles and Activities, Lower Extremity Function (Mobility), Positive Affect and Well-Being, Anxiety, Emotional and Behavioral Dyscontrol, and Fatigue short forms. The largest mean patient-proxy difference observed was 3 T-score points on the Lower Extremity Function (Mobility). ICCs ranged from .34 to .59. However, limits of agreement showed dyad differences exceeding ±20 T-score points, and item-level agreement ranged from not significant to weighted kappa=.34.
  
  
  CONCLUSIONS
  Proxy responses on Neuro-QoL short forms can complement responses of moderate- to high-functioning community-dwelling persons with stroke and augment group-level analyses, but do not substitute for individual patient ratings. Validation is needed for other stroke populations.
authors.affiliation: Department of Rehabilitation Medicine, Icahn School of Medicine at Mount Sinai, New York, NY. Electronic address: allan.kozlowski@mssm.edu.
authors.forename: Allan J
authors.initials: AJ
authors.lastname: Kozlowski
authors.affiliation: Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL.
authors.forename: Ritika
authors.initials: R
authors.lastname: Singh
authors.affiliation: Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL.
authors.forename: David
authors.initials: D
authors.lastname: Victorson
authors.affiliation: Center for Rehabilitation Outcomes Research, Rehabilitation Institute of Chicago, Chicago, IL.
authors.forename: Ana
authors.initials: A
authors.lastname: Miskovic
authors.affiliation: Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL.
authors.forename: Jin-Shei
authors.initials: JS
authors.lastname: Lai
authors.affiliation: Center for Rehabilitation Outcomes Research, Rehabilitation Institute of Chicago, Chicago, IL; Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, Chicago, IL.
authors.forename: Richard L
authors.initials: RL
authors.lastname: Harvey
authors.affiliation: Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL.
authors.forename: David
authors.initials: D
authors.lastname: Cella
authors.affiliation: Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL; Center for Rehabilitation Outcomes Research, Rehabilitation Institute of Chicago, Chicago, IL; Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, Chicago, IL.
authors.forename: Allen W
authors.initials: AW
authors.lastname: Heinemann
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology*; D019727:Proxy / Q000523:psychology*; D011788:Quality of Life; D015203:Reproducibility of Results; D012959:Socioeconomic Factors; D020521:Stroke / Q000523:psychology*; D000071939:Stroke Rehabilitation
keywords: Proxy; Quality of life; Rehabilitation; Stroke