Clinical Edge

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Patient-Reported vs Clinician-Rated Outcomes in HD

J Neurol; ePub 2018 Apr 23; Carlozzi, Boileau, et al

Although self-report ratings from patients with Huntingdon disease (HD) were not a perfect match with associated clinician-rated measures, differences were small, according to a recent study. 486 participants with premanifest or manifest HD 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 HD. Researchers found:

  • 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.
  • 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.


Carlozzi NE, Boileau NR, Perlmutter JS, et al. Agreement between clinician-rated versus patient-reported outcomes in Huntington disease. [Published online ahead of print April 23, 2018]. J Neurol. doi:10.1007/s00415-018-8852-5.