Kumar Rakesh, Nagappa Madhu, Sinha Sanjib, Taly Arun B, Rao Shivaji
Department of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, Karnataka, India.
Neurol India. 2016 May-Jun;64(3):405-10. doi: 10.4103/0028-3886.181542.
Myasthenia gravis (MG) is an autoimmune disorder with a chronic fluctuating course. Quality of life (QoL) is affected by physical restrictions due to disease-related symptoms and effects of long-term treatment.
The purpose of this study was to assess QoL in a cohort of MG with stable disease course on optimal therapy.
MG-QoL-15 was applied prospectively to 50 subjects of MG from India.
Mean MG-QoL-15 was 10.34 (standard deviation: 9.4; range: 0-32). Mean MG-QoL-15 scores for subjects with Myasthenia Gravis Foundation of America (MGFA) grades I, II, and III/IV were 3.54, 9.4, and 15.94, respectively. QoL scores correlated significantly with the MGFA grade. Age, gender, thymectomized status, thymoma, and steroid therapy did not affect QoL scores. All patients with MGFA grade I scored "0" or "1" in almost all items of MG-QoL-15. Seven and 11 patients with MGFA grades III/IV reported a significant affection (scores "3" or "4") due to "trouble using my eyes" and "plan around MG," respectively; and five subjects were "frustrated by MG." None of the subjects, irrespective of their MGFA grade, reported significant difficulty in getting around public spaces due to MG, or had "trouble in performing personal grooming." One subject each reported significant "trouble driving due to MG" or felt that "MG limits ability to enjoy hobbies and fun activities."
This is the first study from India to assess QoL in MG using MG-QoL-15. Increased disease severity was reflected in worse QoL. MG-QoL-15 is a simple, quick, and user-friendly tool. Longitudinal changes in the QoL scores may be required to determine its utility in the Indian context.
重症肌无力（MG）是一种具有慢性波动性病程的自身免疫性疾病。生活质量（QoL）受到与疾病相关症状导致的身体限制以及长期治疗影响。
本研究的目的是评估在接受最佳治疗且疾病病程稳定的重症肌无力队列中的生活质量。
前瞻性地对来自印度的50名重症肌无力患者应用MG-QoL-15。
MG-QoL-15的平均值为10.34（标准差：9.4；范围：0 - 32）。美国重症肌无力基金会（MGFA）I级、II级和III/IV级患者的MG-QoL-15平均得分分别为3.54、9.4和15.94。生活质量得分与MGFA分级显著相关。年龄、性别、胸腺切除状态、胸腺瘤和类固醇治疗均不影响生活质量得分。所有MGFA I级患者在MG-QoL-15的几乎所有项目中得分均为“0”或“1”。MGFA III/IV级的7名和ll名患者分别报告因“用眼困难”和“围绕重症肌无力安排计划”而受到显著影响（得分“3”或“4”）；5名患者“因重症肌无力而沮丧”。无论MGFA分级如何，均无患者报告因重症肌无力在公共场所走动有显著困难，或“个人护理有困难”。各有1名患者报告“因重症肌无力驾驶困难”或觉得“重症肌无力限制了享受爱好和娱乐活动的能力”。
这是印度第一项使用MG-QoL-15评估重症肌无力患者生活质量的研究。疾病严重程度增加反映为生活质量更差。MG-QoL-ll5是一种简单、快速且用户友好的工具。可能需要生活质量得分的纵向变化来确定其在印度背景下的效用。
