Emergency department visits among patients with neuromuscular diseases receiving home mechanical ventilation: a nationwide population-based study

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BACKGROUND: Population-level data on emergency department (ED) utilization in patients with neuromuscular disease (NMDs) receiving home mechanical ventilation (HMV) remain limited. This study investigated the frequency, outcomes, and associated factors of ED visits using a nationwide administrative database. METHODS: Using the Health Insurance Review and Assessment Service database, we identified patients with NMDs who received HMV between January 2016 and October 2021, based on diagnostic codes and the MM441 procedure code. ED visits and outcomes were analyzed using claims data. Associations between ED visits and tracheostomy or gastrostomy were evaluated using the chi-square test. RESULTS: A total of 1,569 patients were identified; amyotrophic lateral sclerosis (39.7%) and muscular dystrophy (31.0%) were the most common diagnoses. During the study period, 1,009 patients (64.3%) visited the ED at least once, accounting for 5,159 visits (mean 5.1 visits per patient). Among these visits, 36% resulted in hospitalization and 3% resulted in death in the ED. ED visits were more frequent among patients with tracheostomy than in those without tracheostomy (76.6% vs. 59.0%; relative risk [RR], 1.30; 95% confidence interval [CI], 1.21-1.39; p<0.001). In contrast, patients with gastrostomy had a lower proportion of ED visits than those without gastrostomy (22.6% vs. 55.1%; RR, 0.41; 95% CI, 0.35-0.48; p<0.001). CONCLUSION: ED utilization is common among patients with NMDs receiving HMV and is frequently associated with hospitalization, highlighting a substantial acute healthcare burden. These findings highlight the need for improved long-term respiratory care and outpatient management.

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