Abstract

We evaluated the clinical characteristics and outcome of tracheostomy in amyotrophic lateral sclerosis (ALS) using data from the Piemonte and Valle d'Aosta Register for ALS, a prospective epidemiological register collecting all ALS incident cases in two Italian regions. Among the 1260 patients incident in the period 1995–2004, 134 (10.6%) underwent tracheostomy. Young male patients were more likely to be tracheostomised. Site of onset (bulbar vs spinal) and period of diagnosis (1995–1999 vs 2000–2004) did not influence the likelihood of being tracheostomised. The mean duration of hospital stay was 52.0 days (SD 60.5). Overall, 27 patients died while still in hospital (20.1%). Sixty-five patients (48.5%) were discharged to home, whereas 42 (31.3%) were admitted to long-term care facilities. The median survival time after tracheostomy was 253 days. In the Cox multivariable model, the factors independently related to a longer survival were enteral nutrition, age, marital status and ALS centre follow-up. In conclusion, in an epidemiological setting, ALS survival after tracheostomy was <1 year. Sociocultural factors influence the probability of choice to be tracheostomised, even in a highly socialised health system as Italian one.