TY - JOUR
T1 - Validating Neuro-QoL short forms and targeted scales with people who have multiple sclerosis
AU - Miller, Deborah M.
AU - Bethoux, Francois
AU - Victorson, David
AU - Nowinski, Cindy J.
AU - Buono, Sarah
AU - Lai, Jin Shei
AU - Wortman, Katy
AU - Burns, James L.
AU - Moy, Claudia
AU - Cella, David
N1 - Publisher Copyright:
© The Author(s), 2015.
PY - 2016
Y1 - 2016
N2 - 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.
AB - 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.
KW - Health-related quality of life
KW - Multiple sclerosis
KW - Neuro-QOL
KW - Patient-reported outcomes
UR - http://www.scopus.com/inward/record.url?scp=85016184031&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85016184031&partnerID=8YFLogxK
U2 - 10.1177/1352458515599450
DO - 10.1177/1352458515599450
M3 - Article
C2 - 26238464
AN - SCOPUS:84964797335
SN - 1352-4585
VL - 22
SP - 830
EP - 841
JO - Multiple Sclerosis Journal
JF - Multiple Sclerosis Journal
IS - 6
ER -