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

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 clin...

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Bibliographic Details
Published in:Multiple sclerosis 2016-05, Vol.22 (6), p.830-841
Main Authors: Miller, Deborah M, Bethoux, Francois, Victorson, David, Nowinski, Cindy J, Buono, Sarah, Lai, Jin-Shei, Wortman, Katy, Burns, James L, Moy, Claudia, Cella, David
Format: Article
Language:English
Subjects:
Adult
Central nervous system
Clinical trials
Cognitive ability
Emotions
Female
Follow-Up Studies
Humans
Male
Middle Aged
Multiple sclerosis
Multiple Sclerosis - diagnosis
Patient Reported Outcome Measures
Quality of Life
Reproducibility of Results
Severity of Illness Index
Social behavior
Surveys and Questionnaires - standards
Validity
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Summary: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.
ISSN:1352-4585
1477-0970
DOI:10.1177/1352458515599450