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Research article
First published online August 3, 2015

Validating Neuro-QoL short forms and targeted scales with people who have multiple sclerosis

Abstract

Background:

Multiple sclerosis (MS) is a chronic, progressive, and disabling disease of the central nervous system with dramatic variations in the combination and severity of symptoms it can produce. The lack of reliable disease-specific health-related quality of life (HRQL) measures for use in clinical trials prompted the development of the Neurology Quality of Life (Neuro-QOL) instrument, which includes 13 scales that assess physical, emotional, cognitive, and social domains, for use in a variety of neurological illnesses.

Objective:

The objective of this research paper is to conduct an initial assessment of the reliability and validation of the Neuro-QOL short forms (SFs) in MS.

Methods:

We assessed reliability, concurrent validity, known groups validity, and responsiveness between cross-sectional and longitudinal data in 161 recruited MS patients.

Results:

Internal consistency was high for all measures (α = 0.81–0.95) and ICCs were within the acceptable range (0.76–0.91); concurrent and known groups validity were highest with the Global HRQL question. Longitudinal assessment was limited by the lack of disease progression in the group.

Conclusions:

The Neuro-QOL SFs demonstrate good internal consistency, test-re-test reliability, and concurrent and known groups validity in this MS population, supporting the validity of Neuro-QOL in adults with MS.

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Information

Published In

Article first published online: August 3, 2015
Issue published: May 2016

Keywords

  1. Neuro-QOL
  2. multiple sclerosis
  3. health-related quality of life
  4. patient-reported outcomes

Rights and permissions

© The Author(s), 2015.
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History

Manuscript received: January 20, 2015
Revision received: June 24, 2015
Manuscript accepted: July 13, 2015
Published online: August 3, 2015
Issue published: May 2016
PubMed: 26238464

Authors

Affiliations

Deborah M Miller
Mellen Center, Cleveland Clinic, USA
Francois Bethoux
Mellen Center, Cleveland Clinic, USA
David Victorson
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA
Cindy J Nowinski
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA
Sarah Buono
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA
Jin-Shei Lai
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA
Katy Wortman
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA
James L Burns
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA
Claudia Moy
Office of Clinical Research, National Institute of Neurological Disorders and Stroke (NINDS), USA
David Cella
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, USA

Notes

Cleveland Clinic, Mellen Center, 9500 Euclid Ave., Mail Stop U10, Cleveland, OH 44195, USA. [email protected]

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