Mullins Larry L, Carpentier Melissa Y, Paul Robert H, Sanders Donald B
University of Oklahoma Health Sciences Center, Department of Pediatrics, Oklahoma City, Oklahoma, USA.
Muscle Nerve. 2008 Aug;38(2):947-56. 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.
2000年，美国重症肌无力基金会特别工作组建议制定一种专门针对重症肌无力（MG）的生活质量（QOL）测量方法。尽管有研究强调纳入心理因素的重要性，但现有的调查在概念化生活质量时仅依赖于对日常生活身体方面的评估。在本研究中，我们开发了一种专门针对MG的QOL问卷（MG-QOL），该问卷评估了功能的身体和心理方面。MG-QOL问卷作为霉酚酸酯近期一项涉及80例MG患者的前瞻性试验中疗效的次要测量指标。比较表明，在通过主要测量指标定量MG评分（QMG）评估疾病变化方面，MG-QOL比非疾病特异性的QOL测量方法SF-36表现更好。MG-QOL与SF-36高度相关，并与独立身体能力评分表现出更强的关联。本研究结果支持在MG的临床和治疗试验中使用这种新的生活质量测量方法。
