Implementation of specialised care improves survival in patients with amyotrophic lateral sclerosis

Access to multidisciplinary care influences survival in patients with amyotrophic lateral sclerosis (pwALS). However, real-world data comparing structured specialised care with general neurological management remain limited. We aimed to assess the influence of implementing a specialised outpatient clinic on survival in pwALS.

This retrospective cohort study included pwALS meeting the Gold Coast criteria who were treated at the Department of Neurology of the Medical University of Vienna between January 2009 and July 2023. Demographic and clinical parameters and survival data were obtained from the local ALS registry, the Austrian Federation of Social Insurance databases, and the national mortality database of Statistik Austria. Data were censored in December 2024. Outcomes were compared between patients managed before (general care cohort) and after the establishment of a specialised ALS outpatient clinic in 2018 (specialised care cohort).

A total of 242 pwALS were included (47.5% female), of whom 43.8% received general neurological care and 56.2% specialised care. Spinal onset ALS was observed in 65.1% and 70.6%, respectively. Baseline demographic and clinical characteristics were comparable between both cohorts. Median survival time was 27.0 months (95% CI 23.0-35.0) in the general care cohort and 40.0 months (95% CI 32.0-47.0) in specialised care cohort (p = 0.0173). This survival difference was driven by patients with spinal onset ALS, whereas no benefit was observed in those with bulbar onset disease.

Specialised care was associated with improved survival in this real-world ALS cohort, likely reflecting the cumulative effect of coordinated multidisciplinary management rather than individual interventions.