Journal article
Agreement between clinician-rated versus patient-reported outcomes in Huntington disease
Journal of neurology, Vol.265(6), pp.1443-1453
04/23/2018
DOI: 10.1007/s00415-018-8852-5
PMCID: PMC5992091
PMID: 29687215
Abstract
Background
Clinician-rated measures of functioning are often used as primary endpoints in clinical trials and other behavioral research in Huntington disease. As study costs for clinician-rated assessments are not always feasible, there is a question of whether patient self-report of commonly used clinician-rated measures may serve as acceptable alternatives in low risk behavioral trials.
Aim
The purpose of this paper was to determine the level of agreement between self-report and clinician-ratings of commonly used functional assessment measures in Huntington disease.
Design
486 participants with premanifest or manifest Huntington disease were examined. Total Functional Capacity, Functional Assessment, and Independence Scale assessments from the Unified Huntington Disease Rating scale were completed by clinicians; a self-report version was also completed by individuals with Huntington disease. Cronbach’s α was used to examine internal consistency, one-way analysis of variance was used to examine group differences, and paired t tests, kappa agreement coefficients, and intra-class correlations were calculated to determine agreement between raters.
Results
Internal consistency for self-reported ratings of functional capacity and ability were good. There were significant differences between those with premanifest, early-, and late-stage disease; those with later-stage disease reported less ability and independence than the other clinical groups. Although self-report ratings were not a perfect match with associated clinician-rated measures, differences were small. Cutoffs for achieving specified levels of agreement are provided.
Conclusions
Depending on the acceptable margin of error in a study, self-reported administration of these functional assessments may be appropriate when clinician-related assessments are not feasible.
Details
- Title: Subtitle
- Agreement between clinician-rated versus patient-reported outcomes in Huntington disease
- Creators
- Noelle E Carlozzi - University of MichiganNicholas R Boileau - Department of Physical Medicine and Rehabilitation, University of MichiganJoel S Perlmutter - Neurology, Radiology, Neuroscience, Physical Therapy and Occupational Therapy, Washington University in St. LouisKelvin L Chou - Department of Neurology, University of MichiganJulie C Stout - Monash UniversityJane S Paulsen - University of Iowa, Psychological and Brain SciencesMichael K McCormack - Rowan UniversityDavid Cella - Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern UniversityMartha A Nance - Struthers Parkinson’s Center, Hennepin County Medical CenterJin-Shei Lai - Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern UniversityPraveen Dayalu - Department of Neurology, University of Michigan
- Resource Type
- Journal article
- Publication Details
- Journal of neurology, Vol.265(6), pp.1443-1453
- DOI
- 10.1007/s00415-018-8852-5
- PMID
- 29687215
- PMCID
- PMC5992091
- NLM abbreviation
- J Neurol
- ISSN
- 0340-5354
- eISSN
- 1432-1459
- Publisher
- Springer Berlin Heidelberg
- Grant note
- UL1TR000433 / National Center for Advancing Translational Sciences (http://dx.doi.org/10.13039/100006108) Center for Inherited Disease Research / National Institutes of Health (http://dx.doi.org/10.13039/100000002) CHDI Foundation (http://dx.doi.org/10.13039/100005725) R01NS077946; R01NS040068 / National Institute of Neurological Disorders and Stroke (http://dx.doi.org/10.13039/100000065)
- Language
- English
- Date published
- 04/23/2018
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984208550502771
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