Patient-reported outcomes in Huntington's disease: Quality of life in neurological disorders (Neuro-QoL) and Huntington's disease health-related quality of life (HDQLIFE) physical function measures

Noelle E. Carlozzi*, Rebecca E. Ready, Samuel Frank, David Cella, Elizabeth A. Hahn, Siera M. Goodnight, Stephen G. Schilling, Nicholas R. Boileau, Praveen Dayalu

*Corresponding author for this work

Research output: Contribution to journalArticle

5 Scopus citations

Abstract

Background: There is a need for patient-reported outcome measures that capture the impact that motor impairments have on health-related quality of life in individuals with Huntington's disease. Objectives: The objectives of this study were to establish the reliability and validity of new physical functioning patient-reported outcome measures in Huntington's disease. Methods: A total of 510 individuals with Huntington's disease completed 2 Quality of Life in Neurological Disorders (Lower Extremity Function and Upper Extremity Function) and 3 Huntington's Disease Health-Related Quality of Life (Chorea, Speech Difficulties, and Swallowing Difficulties) measures. Clinician-rated and generic self-report measures were also administered. Results: Reliabilities for the new patient reported physical functioning measures were excellent (all Cronbach's α >.92). Convergent, discriminant validity and known group validity was supported. Conclusions: The results provide psychometric support for new patient-reported physical functioning measures and the fact that these measures can be used as clinically meaningful endpoints in Huntington's disease research and clinical practice.

Original languageEnglish (US)
Pages (from-to)1096-1102
Number of pages7
JournalMovement Disorders
Volume32
Issue number7
DOIs
StatePublished - Jul 2017

Keywords

  • HDQLIFE
  • Huntington's disease
  • Neuro-QoL
  • chorea
  • health-related quality of life
  • motor symptoms
  • patient-reported outcome (PRO)
  • physical functioning

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

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