Department of Health Sciences/Public Health, Faculty of Medicine "Carl Gustav Carus", University of Technology Dresden, Germany.
Health Qual Life Outcomes. 2010 Nov 11;8:129. doi: 10.1186/1477-7525-8-129.
Myasthenia gravis (MG) is a chronic neuromuscular disease. Advances in medical therapy have continuously increased the life expectancy of MG patients, without definitively curing the disease. To analyze life circumstances and quality of life (QoL), a large German MG cohort was investigated.
In cooperation with the German Myasthenia Association, 2,150 patients with confirmed MG were asked to respond to a mailed questionnaire. The standardized questions related to demographic data, impairments, therapeutic course, use of complementary therapies, illness-related costs, and quality of life (SF-36). In total, 1,518 patients participated, yielding a response rate of 70.6%. The average age was 56.7 years, and the proportion of females 58.6%.
Despite receiving recommended therapy, many patients still suffered from MG-related impairments. In particular, mobility and mental well-being were reduced; moreover, quality of life was markedly reduced. Stepwise linear regression analysis revealed illness stability, impairments, mental conditions, comorbid diseases, and employment to be determinants of QoL.
Results indicate that despite prolonged life expectancy among MG patients, health-related quality of life is low. This outcome resulted mainly from impaired mobility and depression. Physical and mental well-being might be improved by additional therapy options. Additionally, health care resources could be used more efficiently in these patients.
重症肌无力（MG）是一种慢性神经肌肉疾病。医学治疗的进步不断提高了 MG 患者的预期寿命，但并未彻底治愈该疾病。为了分析生活状况和生活质量（QoL），对一个大型德国 MG 队列进行了调查。
通过与德国重症肌无力协会合作，向 2150 名确诊的 MG 患者发出了一份邮寄问卷。标准化问题涉及人口统计学数据、障碍、治疗过程、补充疗法的使用、与疾病相关的费用和生活质量（SF-36）。共有 1518 名患者参与，应答率为 70.6%。平均年龄为 56.7 岁，女性比例为 58.6%。
尽管接受了推荐的治疗，但许多患者仍患有与 MG 相关的障碍。特别是活动能力和心理健康受到影响，生活质量明显下降。逐步线性回归分析显示，病情稳定、障碍、精神状况、合并症和就业是生活质量的决定因素。
结果表明，尽管 MG 患者的预期寿命延长，但健康相关的生活质量较低。这主要是由于活动能力受损和抑郁所致。通过额外的治疗选择可以改善身体和心理健康。此外，这些患者的医疗保健资源可以更有效地利用。
