Yang Rong, Huang Rui, Chen Dezhi, Song Wei, Zeng Yan, Zhao Bi, Zhou Dong, Shang Hui-Fang
Department of Neurology, West China Hospital, Sichuan University, Chengdu, Sichuan, China.
Amyotroph Lateral Scler. 2011 May;12(3):206-9. doi: 10.3109/17482968.2011.572979. Epub 2011 Apr 21.
Understanding the causes and places of death of amyotrophic lateral sclerosis (ALS) patients leads to the development of better treatment modalities. The present study aimed to identify the causes and places of death of ALS patients in south-west China. A total of 139 ALS patients (89 males and 50 females) were regularly followed up in the Department of Neurology, West China Hospital of Sichuan University from 2004 to 2010 until their deaths. Information on the causes and places of death was provided by family members, caregivers, or family physicians. Overall, 91 patients (65.5%) died of respiratory failure, 36 patients (25.9%) died of nutritional causes due to dysphagia, five patients (3.6%) met sudden deaths, three patients (2.2%) died of heart related causes, and four patients (2.9%) died of unknown reasons. Of the 139 patients, 114 (82%) died at home. Consistent with reports in the literature, respiratory failure is the leading cause of death in ALS patients. However, unlike in other studies, the second leading cause is nutrition related. Most patients die at home. The inconsistencies of these results with foreign studies may be attributable to economic and cultural differences. The findings have significant implications on the treatment modalities and palliative care for ALS patients in China.
了解肌萎缩侧索硬化症(ALS)患者的死亡原因和地点有助于开发更好的治疗方式。本研究旨在确定中国西南部ALS患者的死亡原因和地点。2004年至2010年期间,四川大学华西医院神经内科对总共139例ALS患者(89例男性和50例女性)进行了定期随访,直至他们死亡。死亡原因和地点的信息由家庭成员、护理人员或家庭医生提供。总体而言,91例患者(65.5%)死于呼吸衰竭,36例患者(25.9%)死于吞咽困难导致的营养原因,5例患者(3.6%)猝死,3例患者(2.2%)死于心脏相关原因,4例患者(2.9%)死因不明。在这139例患者中,114例(82%)在家中死亡。与文献报道一致,呼吸衰竭是ALS患者的主要死亡原因。然而,与其他研究不同的是,第二大死因与营养相关。大多数患者在家中死亡。这些结果与国外研究的不一致可能归因于经济和文化差异。这些发现对中国ALS患者的治疗方式和姑息治疗具有重要意义。