Hôpital San Salvadour (Assistance Publique Hôpitaux de Paris), BP 30 080, 83 407, Hyères Cedex, France.
J Neurol. 2011 Oct;258(10):1801-4. doi: 10.1007/s00415-011-6018-9. Epub 2011 Apr 2.
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.
在完全丧失身体和功能能力并依赖侵入性机械通气（IV）的患者中，评估生活质量（QOL）的研究很少。我们比较了接受侵入性机械通气的肌萎缩侧索硬化症（ALS）和闭锁综合征（LIS）患者与未接受机械性侵入性通气的 ALS 和 LIS 患者的 QOL。研究纳入了 34 名患者，其中 27 名患有 ALS，7 名患有 LIS（血管或肿瘤病因）。12 名患者接受了侵入性通气，22 名患者接受了非侵入性通气，在非侵入性通气组中，有 5 名患者通过面罩通气。以下量表用于评估患者：肌萎缩侧索硬化症功能评定量表（ALSFRS）、麦吉尔、36 项简短健康调查（SF36）、贝克抑郁量表 II 型、多伦多述情障碍量表和 Spielberger 焦虑量表。侵入性通气组（IV）的平均 ALSFRS 评分明显低于非侵入性通气组。IV 组和非侵入性通气组之间的 McGILL 和 SF36 评分无显著差异；两组之间其他量表也没有显著差异。IV 组与未接受侵入性机械通气的 LIS 组相比，SF36 和 McGILL QOL 评分无显著差异。IV 组和未接受侵入性通气的患者之间的 QOL 没有显著差异，但 IV 组的 ALSFRS 评分明显较低，而对依赖程度相同的未接受通气的 LIS 患者的 QOL 评分进行比较，并未显示出任何差异。对于接受气管切开术的患者进行侵入性机械通气可以延长生命，并且不会影响其 QOL；医疗团队应该意识到这一点。
