What are the most important factors that determine survival with ALS?

Life with ALS is shaped by various complex and individual factors. Key factors affecting survival include the rate of progression (the speed at which motor deficits spread) and the onset of life-limiting symptoms (swallowing difficulties and respiratory dysfunction). In addition to the neurological course of ALS, the use of life-prolonging measures (PEG or respiratory support) is relevant.

Of crucial importance is the question of how patients assess their individual quality of life—and, depending on that, whether they accept and make use of life-prolonging measures. The percentage of patients who consent to invasive ventilation currently ranges between 5 and 10 percent. However, other measures—such as optimal nutrition and care, the provision of mobility and communication aids, and opportunities for private and social participation—also contribute significantly to improved survival and an enhanced quality of life.