Quality of life and measures of quality of life in patients with neuromuscular disorders.
In this review we present an overview of quality of life (QOL) and QOL measures in neuromuscular disorders. We discuss the characteristics of QOL measures used in neuromuscular research, highlighting differences between generic versus disease-specific and global versus health-related QOL instruments. The phenomenon of response shift is reviewed. Commonly used QOL instruments are reviewed for amyotrophic lateral sclerosis, muscle diseases, myasthenia gravis, and polyneuropathy. We also review some of what is known about QOL for patients with these neuromuscular disorders.
Department of Neurology, University of Virginia, Charlottesville, Virginia 22908, USA. tmb8r@virginia.edu
Ted M
TM
Burns
Christopher D
CD
Graham
Michael R
MR
Rose
Zachary
Z
Simmons
D000203:Activities of Daily Living; D006304:Health Status; D006801:Humans; D009468:Neuromuscular Diseases / Q000523:psychology*; D011594:Psychometrics; D011788:Quality of Life; D011795:Surveys and Questionnaires