National survey of patients with neuromuscular disease and COVID-19 in Japan.

BACKGROUND/PURPOSE: Coronavirus disease 2019 (COVID-19) poses particular risks for patients with neuromuscular disorders, but its severity and outcomes in this population remain unclear. We investigated the clinical features, transmission routes, treatments, and prognostic factors of COVID-19 in patients with neuromuscular disorders in Japan. METHODS: A retrospective questionnaire survey was submitted to 13 neuromuscular disease centers to identify patients diagnosed with COVID-19 between December 2019 and October 2022. The collected data comprised demographics, underlying diseases, living situation, activities of daily living (ADLs), vaccination status, respiratory and cardiac management, symptoms, treatments, and outcomes. We evaluated whether pre-illness respiratory status, cardiac function, vaccination history, and age could be risk factors associated with prognosis after COVID-19 infection. RESULTS: In total, 155 patients were identified. Duchenne muscular dystrophy was the most frequent neuromuscular disease (35%), followed by myotonic dystrophy (14%). The mean patient age was 30.7 years, and 70% of patients lived at home with family. Meanwhile, 54% of patients were wheelchair users, and 8% were bedridden. The vaccination rate was 56%. Fever was the most common symptom, and 5% of patients were asymptomatic. Antipyretics were the most frequent treatments; adults mainly received antivirals. Overall, 87% recovered fully, but two patients died. Of the examined factors, only higher age at onset was predictive of worse prognosis (p = 0.0019). CONCLUSIONS: COVID-19 symptoms and transmission routes in patients with neuromuscular disease resembled those in the general population. Advanced age was associated with poorer outcomes, underscoring the need for careful monitoring in these subgroups.