4.4 Article

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

Journal

MULTIPLE SCLEROSIS JOURNAL
Volume 22, Issue 6, Pages 830-841

Publisher

SAGE PUBLICATIONS LTD
DOI: 10.1177/1352458515599450

Keywords

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

Funding

  1. National Institute for Neurological Disorders and Stroke [HHSN 2652004236-01C, HHSN 271201200036C-0-0-1]

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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 ( = 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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