Résumé :
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Background : Several studies have provided convincing evidence that non-invasive ventilation can prolong survival in patients with ALS. Objectives : We wished to present survival data in ALS patients on home mechanical ventilation (HMV) and compare the probability of survival with other patients on HMV. Methods : From the nation wide Swedish Home Mechanical Ventilation Register we have prospective data on patients on HMV through nearly 10 years. The patients represent a broad diagnostic spectrum that enables us to compare data in a large number of patients. Results : The survival of 1474 patients on HMV is displayed and ALS patients make up 148 (10%) of this material. The survival after starting ventilation in the ALS group was significantly poorer compared to all other groups (p<0.001). Discussion : In ALS previous studies have stated varying survival rates. In an early series of 101 patients survival rates were 69% at 2 years and 33% at 5 years. This is considerably higher rates compared with more recent smaller studies and our report. In another study including 122 patients, 38 used NIV more than 4 h/day and had a survival rate after 2 years just below 20%, which is very close to the findings in our study. In conclusion, even if HMV probably improves life expectancy in MND/ALS, survival is significantly poorer compared to all other patient groups on HMV.
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