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

3 Citations (Scopus)

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 1 2017

Fingerprint

Huntington Disease
Nervous System Diseases
Quality of Life
Reproducibility of Results
Chorea
Deglutition
Psychometrics
Upper Extremity
Self Report
Lower Extremity
Patient Reported Outcome Measures
Research

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

Cite this

Carlozzi, Noelle E. ; Ready, Rebecca E. ; Frank, Samuel ; Cella, David ; Hahn, Elizabeth A ; Goodnight, Siera M. ; Schilling, Stephen G. ; Boileau, Nicholas R. ; Dayalu, Praveen. / 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. In: Movement Disorders. 2017 ; Vol. 32, No. 7. pp. 1096-1102.
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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. / Carlozzi, Noelle E.; Ready, Rebecca E.; Frank, Samuel; Cella, David; Hahn, Elizabeth A; Goodnight, Siera M.; Schilling, Stephen G.; Boileau, Nicholas R.; Dayalu, Praveen.

In: Movement Disorders, Vol. 32, No. 7, 01.07.2017, p. 1096-1102.

Research output: Contribution to journalArticle

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