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Mov Disord. 2017 Jul;32(7):1096-1102. doi: 10.1002/mds.27046. Epub 2017 May 27.

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.

Author information

1
Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, Michigan, USA.
2
Department of Psychological and Brain Sciences, University of Massachusetts, Amherst, Massachusetts, USA.
3
Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
4
Institute for Health Services Research & Policy Studies, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA.
5
Department of Medical Social Sciences, Northwestern University, Chicago, Illinois, USA.
6
Institute for Social Research, University of Michigan, Ann Arbor, Michigan, USA.
7
Department of Neurology, University of Michigan, Ann Arbor, Michigan, USA.

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. © 2017 International Parkinson and Movement Disorder Society.

KEYWORDS:

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

PMID:
28556412
PMCID:
PMC5605785
DOI:
10.1002/mds.27046
[Indexed for MEDLINE]
Free PMC Article

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