Neurology, Neurological Institute, Taipei Veterans General Hospital and National Yang-Ming University.
J Epidemiol. 2013;23(6):424-8. doi: 10.2188/jea.je20130045. Epub 2013 Aug 10.
Few studies have assessed cause of death among patients with amyotrophic lateral sclerosis (ALS). We investigated underlying cause and place of death among patients with ALS in Taiwan during 2003-2008.
The data source was the Taiwan National Health Insurance database for the period 2003-2008. In total, 751 patients older than 15 years with a primary diagnosis of ALS were included and followed until 2008 in the national mortality database. Crude mortality rates (per 100 person-years) and standardized mortality ratios (SMRs) were calculated in relation to cause of death, sex, and age group (15-44, 45-64, 65+ years).
In total, 297 (39.6%) patients died during the follow-up period, an age- and sex-standardized mortality rate 13 times (95% CI, 10.6-15.6) that of the Taiwanese general population. The leading cause of death among the patients was respiratory diseases, and the second most frequent cause was cardiovascular diseases. During the first year after an ALS diagnosis, suicide was much more frequent (SMR, 6.9; 95% CI, 1.9-17.6) than among the general population.
During 2003-2008, respiratory diseases and cardiovascular diseases were the most frequent causes of death among Taiwanese patients with ALS. In addition, our findings indicate that suicide prevention is an urgent priority during the period soon after an ALS diagnosis.
鲜有研究评估肌萎缩侧索硬化症（ALS）患者的死亡原因。我们调查了 2003-2008 年台湾 ALS 患者的根本死因和死亡地点。
数据来源为 2003-2008 年的台湾全民健康保险数据库。共纳入 751 名年龄大于 15 岁、初次诊断为 ALS 的患者，并随访至 2008 年的全国死亡率数据库。计算了死亡率（每 100 人年）和标准化死亡率比（SMR）与死因、性别和年龄组（15-44 岁、45-64 岁、65 岁以上）的关系。
在随访期间，共有 297 名（39.6%）患者死亡，其年龄和性别标准化死亡率是台湾一般人群的 13 倍（95%CI，10.6-15.6）。患者的主要死因是呼吸系统疾病，其次是心血管疾病。在 ALS 诊断后的第一年，自杀的频率明显更高（SMR，6.9；95%CI，1.9-17.6）。
2003-2008 年，呼吸系统疾病和心血管疾病是台湾 ALS 患者死亡的最常见原因。此外，我们的研究结果表明，在 ALS 诊断后不久，预防自杀是当务之急。
