How often are ALS patients treated with invasive ventilation?

In Germany, there are large differences in the frequency of invasive ventilation in people with ALS. The frequency and acceptance of this therapy option is also subject to change and development. Since the 1990s, there has been a steady increase in invasive ventilation. At the Charité ALS Center, around 9% of all patients are treated with invasive ventilation. Around 15 years ago, the proportion of patients with long-term ventilation via a tracheostoma was less than 5%.

A decisive factor in the increase in respiratory therapy is the improved provision of assistive devices (especially aids for communication and mobility). Improved provision of assistive devices enables improved social participation (despite respiratory therapy). Due to the increased use of complex and modern assistive devices (and the associated increase in participation and quality of life), it is to be expected that prolonging life through ventilation will be acceptable and desirable for an increasing proportion of those affected.

The decision against or in favor of invasive ventilation is complex and determined by numerous factors. There are differences between urban and rural regions and between different federal states. The exact factors for the regional differences in the frequency of invasive ventilation have not yet been clarified and require further analysis. In principle, the aim should be to have uniform criteria for invasive ventilation throughout Germany, based on the guidelines of the neurological societies. Overall, invasive ventilation is used in a smaller subgroup.