Disease-specific measure of quality of life for myasthenia gravis

• Published in: Muscle & nerve 2008-08, Vol.38 (2), p.947-956
• Main Authors: Mullins, Larry L., Carpentier, Melissa Y., Paul, Robert H., Sanders, Donald B.
• Format: Article
• Language: English
• Subjects: Activities of Daily Living; Adult; Aged; Aged, 80 and over; Biological and medical sciences; Degenerative and inherited degenerative diseases of the nervous system. Leukodystrophies. Prion diseases; Diseases of striated muscles. Neuromuscular diseases; Female; Humans; Male; Medical sciences; Middle Aged; Multivariate Analysis; myasthenia gravis; Myasthenia Gravis - physiopathology; Myasthenia Gravis - psychology; Neurology; physical ability; Quality of Life; Reproducibility of Results; Sickness Impact Profile; Surveys and Questionnaires - standards
• ISSN: 0148-639X; 1097-4598
• DOI: 10.1002/mus.21016

In 2000 a Task Force of the Myasthenia Gravis Foundation of America recommended development of a quality of life (QOL) measure specific for myasthenia gravis (MG). Extant investigations have relied solely on assessment of physical aspects of daily living in conceptualizing QOL, despite research that emphasizes the importance of including psychological factors. In the present study we developed a QOL questionnaire specific to MG (MG‐QOL) that assesses both physical and psychological aspects of function. The MG‐QOL questionnaire was administered as a secondary measure of efficacy in a recently completed prospective trial of mycophenolate mofetil involving 80 MG patients. Comparisons indicated that the MG‐QOL performed better than a nondisease‐specific measure of QOL, the SF‐36, in demonstrating disease change as assessed by the primary measure, the Quantitative MG score (QMG). The MG‐QOL correlated highly with the SF‐36, and demonstrated stronger associations with independent physical ability ratings. Results from this study support the use of this new measure of QOL, both clinically and in treatment trials of MG. Muscle Nerve 38: 947–956, 2008