Institution of Neuroscience and Physiology, University of Gothenburg, Gothenburg, Sweden.
BMJ Open. 2019 Apr 20;9(4):e023185. doi: 10.1136/bmjopen-2018-023185.
Locked-in syndrome (LiS) is a rare condition, characterised by a complete paresis except for vertical eye movements and blinking with cognitive functions intact, commonly caused by ischaemia in the ventral pons. Previous studies have indicated that persons with LiS can live on for many years and have a good quality of life (QoL). To our knowledge, LiS has never been studied in Sweden. The aim was to explore LiS in Sweden; describing population characteristics, living situation, mortality/cause of death and health-related QoL/impact on participation.
Explorative, nationwide study with two parts (quantitative and qualitative). Persons registered in the national quality register WebRehab during 2007-2014 were eligible.
Ten persons were identified in part 1, four participated in part 2. During part 1, data were collected from WebRehab, medical charts and registers, while questionnaires and interviews were used during part 2.
Seven out of 10 were men, median age at onset was 49 years and the cause of LiS was in all cases stroke, 70% of which ischaemic. Three were deceased with a median time of survival of 1.9 years. Seven were still alive, with a median time elapsed since onset of 5.8 years. Three participants experienced good QoL. Information, respect from professionals and more specialised technical devices were three areas containing unfulfilled needs.
This was the first study conducted in Sweden and the characteristics of this population were like those studied abroad. In this study, the persons with LiS who were interviewed expressed the need for proper care, appropriate technical aids and a supportive environment in order to have QoL. However, there is still much room for improvements.
闭锁综合征（LiS）是一种罕见的疾病，其特征是除了垂直眼球运动和眨眼外，全身瘫痪，认知功能完好，通常由脑桥腹侧缺血引起。先前的研究表明，患有 LiS 的人可以存活多年，且生活质量（QoL）良好。据我们所知，瑞典从未对 LiS 进行过研究。本研究旨在探索瑞典的 LiS 患者，描述其人口特征、生活状况、死亡率/死因以及与健康相关的 QoL/对参与度的影响。
全国性的探索性研究，包括两部分（定量和定性）。2007-2014 年期间在全国质量登记处 WebRehab 登记的患者符合入选条件。
第 1 部分共确定了 10 名患者，其中 4 名患者参加了第 2 部分。第 1 部分期间，从 WebRehab、病历和登记处收集数据，而第 2 部分则使用了问卷调查和访谈。
10 名患者中有 7 名是男性，发病时的中位年龄为 49 岁，LiS 的病因均为中风，其中 70%为缺血性。3 名患者已经死亡，中位生存时间为 1.9 年。7 名患者仍然存活，自发病以来的中位时间为 5.8 年。3 名患者体验到了良好的 QoL。信息、专业人员的尊重和更多专门的技术设备是三个存在未满足需求的领域。
这是在瑞典进行的第一项研究，该人群的特征与国外研究相似。在这项研究中，接受访谈的 LiS 患者表示需要适当的护理、适当的技术辅助和支持性环境，以提高他们的生活质量。然而，仍有很大的改进空间。
