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

BACKGROUND: 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. OBJECTIVE: The study's objective was evaluation of QOL in LIS patients. DESIGN: We have compared QOL in LIS patients with QOL in healthy controls (control group). SETTING/SUBJECTS: 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. MEASUREMENTS: 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). RESULTS: 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. CONCLUSION: 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.

Quality of life of ALS and LIS patients with and without invasive mechanical ventilation.

There are very few studies where quality of life (QOL) is assessed in patients with complete physical and functional disability and dependence to invasive mechanical ventilation (IV). We compared QOL of amyotrophic lateral sclerosis (ALS) and locked-in-syndrome (LIS) patients with invasive mechanical ventilation to ALS and LIS patients without mechanical invasive ventilation. Thirty-four patients, 27 with ALS and seven with LIS (vascular or tumoral aetiology) were included in the study. Twelve had invasive ventilation, 22 had non-invasive ventilation, and in the non-invasive ventilation group, five of them had ventilation via mask. The following scales were used for patients: ALS Functional Rating Scale (ALSFRS), McGILL, Short-Form 36 (SF36), Beck Depression Inventory-II, the Toronto Alexithymia Scale and the anxiety inventory of Spielberger. Mean ALSFRS scores were significantly lower in the invasive ventilation group (IV) than in the non-invasive ventilation group. McGILL and SF36 were not significantly different between the IV group and the non-invasive ventilation group; there were no significant differences between the two groups for others scales either. Comparison between IV group and LIS without invasive mechanical ventilation revealed no significant difference for SF36 and McGILL QOL scores. QOL was not significantly different between the IV and not invasively ventilated patients, but ALSFRS was significantly lower in the IV group, and comparison of QOL scores between non-ventilated LIS patients who had the same score of dependence that invasively ventilated patients did not show any difference. Invasive mechanical ventilation for patients who accept tracheotomy allows life prolongation and their QOL is not affected; medical teams should be aware of that.