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

Deborah M. Miller*, Francois Bethoux, David Victorson, Cindy J. Nowinski, Sarah Buono, Jin Shei Lai, Katy Wortman, James L. Burns, Claudia Moy, David Cella

*Corresponding author for this work

Research output: Contribution to journalArticle

14 Scopus citations

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 (a = 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.

Original languageEnglish (US)
Pages (from-to)830-841
Number of pages12
JournalMultiple Sclerosis
Volume22
Issue number6
DOIs
StatePublished - Jan 1 2015

Keywords

  • Health-related quality of life
  • Multiple sclerosis
  • Neuro-QOL
  • Patient-reported outcomes

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

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