重症肌無力的疾病負擔

重症肌無力是一神經肌肉交接的自體免疫疾病，近年來醫療技術的進步，死亡率大幅下降，罹病率逐年上升，此病的疾病負擔也愈來愈受重視。疾病負擔有兩大要素要考量：一是維持疾病正常生活品質的考量，在生活品質研究方面，因為肌肉無力造成生活的不便，生活品質的評量變差，焦慮憂鬱指數較一般人高。新光醫院也對重症肌無力病患壓力源，社會支持力復原力研究，結果顯示在生活品質指標的疾病負擔因復原力的增加而減少，病患得到醫療人員或關懷幹部社會支持程度越高，復原力越好。在心理健康的幸福指標研究，病人幸福指標比正常人低，經過團體衛教介入後，其幸福指標指數會有顯著的改善，可見病人在生活品質的疾病負擔，是可用團體輔導的方式來改善。在多國合作的前瞻性真實世界的觀察研究，讓病人回報現況及生活品質的量表，初步結果，肌無力生活品質量表與歐洲5維健康量表，與疾病的嚴重度成正相關。其次要了解疾病負擔是疾病治療的成本，從醫療經濟學中治療疾病的直接成本及間接成本數據，同時對該地區政府醫療資源的投資情況及不同的保險制度，對於此疾病的給付。在醫療費用方面，治療策略視其臨床的不同症狀而變，大部分病人可在門診追蹤，而嚴重的病人因吞嚥困難或呼吸困難，就必須住院治療，有危及生命時可能還要住加護病房，故治療此病的花費變異性極大。對於重症肌無力治療醫療費用，在全世界各地都不斷地成長。在台灣亦是如此，近年來新的標靶治療發展，衍生出來費用更是驚人，都是我們需要考量的。如何能定下好的治療策略，快速達標也是減輕疾病負擔的重要目標。

Myasthenia gravis is an autoimmune disease affecting the neuromuscular junction. With the recent advances in medical technology, the mortality rate has significantly decreased while the prevalence rate has increased year by year. Consequently, the disease burden of myasthenia gravis has received increasing attention. Two major factors must be considered in terms of disease burden: one is maintaining a normal quality of life. In quality of life studies, muscle weakness causes inconvenience in daily life, leading to lower quality of life assessments and higher anxiety and depression indices compared to the general population. Shin Kong Hospital has conducted research on stressors, social support, and resilience in myasthenia gravis patients. The results show that the disease burden in quality of life indicators decreases with increased resilience, and the higher the level of social support from medical personnel or care cadres, the higher the resilience. In the study of psychological well-being indicators, patients' well-being indicators were lower than those of the general population. However, after group health education intervention, there was a significant improvement in well-being indicators, indicating that the disease burden on quality of life can be improved through group counseling. In a multi-country collaborative prospective real-world observational study, patients reported their current status and quality of life using scales. Preliminary results showed that the Myasthenia Gravis Quality of Life Scale and the European 5-Dimensional Health Scale were positively correlated with disease severity. Another important aspect of understanding the disease burden is the cost of disease treatment. Health economics considers both the direct and indirect costs of treating the disease, as well as the region's government investment in medical resources and the impact of different insurance systems on the disease coverage. Regarding medical expenses, treatment strategies vary depending on clinical symptoms. Most patients can be followed up in outpatient clinics, but severe patients with swallowing or breathing difficulties need hospitalization and may require intensive care if life-threatening. Therefore, the treatment costs for this disease vary greatly. The medical expenses for treating myasthenia gravis are continuously increasing worldwide, including in Taiwan. In recent years, the development of new targeted therapies has resulted in astonishing costs, which we must consider. Establishing effective treatment strategies to quickly achieve therapeutic goals is also an important objective in reducing the disease burden.