中国三个大城市意识障碍患者的治疗及陪护者现状的多中心调查

Conditions of patients with chronic disorders of consciousness and caregiver's attitude and pressure in three cities in China

目的调查国内三个大城市的慢性意识障碍患者的治疗现状,以及造成家庭陪护者生活和精神压力的可能因素。方法 2015年1~12月在广州军区总医院神经医学专科医院高压氧与神经康复中心、北京军区总医院附属八一脑科医院、杭州师范大学国际植物状态和意识科学研究所收回了63例慢性意识障碍患者陪护者的有效调查问卷。对调查资料采用描述性统计方法进行统计学分析。结果 63份问卷涉及的慢性意识障碍患者中,男性45例(71.4%),女性18例(28.6%);诊断为植物状态41例(65.1%),微意识状态为20例(31.7%)。大部分患者来自农村。外伤、脑血管病变和缺血缺氧性脑病是最常见的病因。51名陪护者(81.0%)不同意放弃治疗,35名陪护者(55.5%)表示目前精神状态差。结论三大城市的慢性意识障碍患者普遍获得积极的治疗,而陪护者的生活和精神压力非常大。应采取一些有效改进社会救助和患者陪护的措施,并采用有效的方法来缓解陪护者的压力。

Objective With the progress of modern medical technology and gradually improvement of emergency system,there are more patients with chronic disorders of consciousness.However,we know little about the basic conditions of patients with chronic disorders of consciousness and their caregiver＇s attitude and burden. Several studies have suggested this topic is of great importance. But there is no relevant report in China. In order to look deep in to the basic conditions of patients with chronic disorders of consciousness,factors that may affect the treatment and the pressure on life and mental health which caregivers bears at present in China. Methods we collected a total of63 valid questionnaires from 3 different hospitals in Guangzhou,Hangzhou and Beijing respectively.Questionnaires were analyzed according to qualitative content analysis. Results 45（ 71. 4%）patients were male and 18（ 28. 6%） patients were female. 41（ 65. 1%） patients were diagnosed with VS,and only 20（31. 7%） MCS. The majority of the patients came from countryside. Trauma,cerebral vascular disease and hypoxic-ischaemic encephalopathy（ HIE） were the most frequent causes. 51（81. 0%） caregivers disagreed on giving up treatment. 35（55. 5%） caregivers showed bad spirit mood at present. Most patients with chronic disorders of consciousness gained positivetreatment,whereas caregivers＇ lives and spirit beard considerable pressure. Conclusions Basically patients can get positive treatment. However some improvements should be taken on the social assistance and patients＇ care. At the same time,caregivers bear considerable pressure on their lives and spirit. A set of effective policies should be designed to give a hand to them.