Department of Logopedic and Audiological Sciences, Katholieke Universiteit Leuven, Leuven, Belgium.
Disabil Rehabil. 2013 May;35(9):713-8. doi: 10.3109/09638288.2012.705950. Epub 2012 Aug 16.
to explore and describe the health care situation, the use of aids, the way of communicating and the quality of life of Locked-in syndrome patients in Flanders (Belgium) and to collect information on their fulfilled and unfulfilled needs.
in depth interviews with eight LIS-patients by means of an extensive questionnaire consisting of five parts: (i) general information and medical history, (ii) health care, rehabilitation and follow-up, (iii) speech and communication, (iv) quality of life, (v) needs and problems experienced.
the patients' condition, mostly caused by ischemic stroke, persisted for a mean period of 6 years 8 months. Their mean age was 41;10 years. At the moment of our study all the patients were living at home. Care was provided by an extensive care team. Some recovery of head and neck movements was mentioned, recovery of upper and lower limb mobility however was very limited. Most patients use an alphabet system to communicate, all of them had access to and made use of a PC with internet connection. Except for the domain of physical functioning, the quality of life scores of our patient group are rather high. As for unfulfilled needs, half of the patients experience a lack of information on their condition and a lack of appropriate information on (communication) aids.
most results seem to be in line with those of other studies, though larger scale and follow-up studies are needed to confirm these findings.
探索和描述弗拉芒（比利时）地区闭锁综合征患者的医疗保健状况、辅助器具的使用、沟通方式和生活质量，并收集他们已满足和未满足需求的信息。
通过一份包含五个部分的详细问卷，对 8 名 LIS 患者进行深入访谈：（i）一般信息和病史，（ii）医疗保健、康复和随访，（iii）言语和沟通，（iv）生活质量，（v）经历的需求和问题。
患者的病情主要由缺血性中风引起，持续了平均 6 年 8 个月。他们的平均年龄为 41.10 岁。在我们研究的那一刻，所有患者都在家中生活。由一个广泛的护理团队提供护理。有一些头部和颈部运动的恢复，但上肢和下肢的活动度的恢复非常有限。大多数患者使用字母系统进行沟通，他们都可以访问并使用带有互联网连接的 PC。除了身体功能领域，我们患者群体的生活质量评分相当高。至于未满足的需求，一半的患者表示缺乏对自身病情的信息，以及对（沟通）辅助器具的适当信息。
大多数结果似乎与其他研究一致，但需要更大规模和随访研究来证实这些发现。
