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J Palliat Med. 2013 Nov;16(11):1455-8. doi: 10.1089/jpm.2013.0120.

Evaluation of quality of life in complete locked-in syndrome patients.

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  • 11 Federation Polyhandicap Multihandicap Assistance Publique Hopitaux De Paris , Hyeres, France .



There are few studies where quality of life (QOL) and contributive factors are assessed in locked-in syndrome (LIS) patients with complete physical and functional disability and dependence on caregivers.


The study's objective was evaluation of QOL in LIS patients.


We have compared QOL in LIS patients with QOL in healthy controls (control group).


We have included 19 LIS patients, most of them with vascular etiologies or terminal course of ALS, and 20 healthy controls comparable with LIS patients for age; none of them was in a caregiving position.


Administered to patients and controls were the McGill Quality of Life Single Item Scale (MQOL-SIS) Part A; Short Form survey (SF-36), Mental Component Summary (MCS) and Physical Component Summary (PCS); Beck Depression Inventory-II (BDI-II); and Toronto Alexithymia Scale (TAS).


Mean MQOL-SIS and MCS SF-36 were not significantly different between the LIS group and healthy controls. PCS SF-36 score was significantly higher in controls. There were no significant differences between the two groups for TAS scores. Frequency of depressive symptoms was significantly higher in LIS patients than in controls.


In our study, QOL in LIS patients was not significantly altered compared to control subjects in MQOL-SIS and in the MCS SF-36 scale; these results match previous studies published in the literature. Several factors may have an impact on QOL in LIS patients, such as family support and patient-computer communication devices; these may have contributed to improve QOL in LIS patients in this study.

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