Locked-in syndrome in Sweden: an explorative study of persons who underwent rehabilitation

Abstract

Degree Project Thesis, Programme in Medicine. TITLE: Locked-in syndrome in Sweden: an explorative study of persons who underwent rehabilitation. Introduction: Locked-in syndrome (LiS) is a rare condition, characterized by a complete paresis except for vertical eye movements and blinking with cognitive functions intact, commonly caused by ischemia in ventral pons. Previous studies have indicated that persons with LiS can live on for many years and have a good quality of live (QoL). LiS has, to our knowledge, never been studied in Sweden. Aim: To explore LiS in Sweden; describing population characteristics, living situation, mortality/cause of death and health-related quality of life/impact on participation. Methods: Explorative, nation-wide study. Persons registered in WebRehab during 2007-2014 were eligible. Ten study persons were included in part one, four participated in part two. Data collection; Part one: WebRehab, medical charts and registers. Part two; questionnaires and interviews. Results: Seven out of ten were men, median age at onset was 49 years and the cause of LiS was in all cases stroke, 70% ischemic. Three of the study persons were deceased, median time of survival 1.9 years. Seven of the study persons were still alive, median time elapsed since onset was 5.8 years. Three participants experienced good quality of life. Information and respect were two areas with unfulfilled needs. Conclusion: This was the first study conducted in Sweden and the characteristics of this population were similar to those studied abroad. With proper care, appropriate technical aids and a supportive environment, it is possible for persons with LiS to have a good quality of life but there is still much room for improvements. Key words: Locked-in syndrome; Living situation; Quality of Life