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

Mult Scler. 2016 May;22(6):830-41. doi: 10.1177/1352458515599450. Epub 2015 Aug 3.

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.

Keywords: Neuro-QOL; health-related quality of life; multiple sclerosis; patient-reported outcomes.

Publication types

  • Validation Study

MeSH terms

  • Adult
  • Female
  • Follow-Up Studies
  • Humans
  • Male
  • Middle Aged
  • Multiple Sclerosis / diagnosis*
  • Patient Reported Outcome Measures*
  • Quality of Life*
  • Reproducibility of Results
  • Severity of Illness Index*
  • Surveys and Questionnaires / standards