2235 National Trends in motor neurone disease-associated mortality from 1999–2020

Abstract Introduction Motor Neurone Disease (MND) is a neurodegenerative condition affecting the spinal cord and brainstem, commonly associated with a reduced life expectancy. This study describes demographic trends in MND-associated mortality in the United States over 20 years. Methods Data were extracted from the Centers for Disease Control and Prevention Wide-Ranging OnLine Data for Epidemiologic Research Underlying Cause of Death database. Death certificates from 1999–2020 with MND (International Classification of Diseases-10th Revision code G12.2) recorded as the cause of mortality were extracted and annual MND-associated crude mortality rates (CMR) and age-adjusted mortality rates (AAMR) per 100,000 persons with 95% confidence intervals (CI) were calculated. Joinpoint regression was used to calculate the annual trends in MND-associated mortality by calculating the annual percentage change. Results Between 1999 to 2020, there were a total of 140,945 MND-associated deaths. Overall AAMR was 1.9 per 100,000 persons (95% CI 1.9–1.9). Male sex had a consistently higher AAMR (2.3 per 100,000 95% CI 2.3–2.3) than female sex (1.6 per 100,000 95% CI 1.5–1.6). White patients had higher AAMR (2.1 per 100,000 95% CI 2.0–2.1) than Black/African Americans (1.1 per 100,000 95% CI 1.0–1.1), American Indians/Alaska Natives (0.8 per 100,000 95% CI 0.7–0.9), Asians/Pacific Islanders (0.8 per 100,000 95% CI 0.7–0.9). The 3 US States with the highest AAMR were Vermont, followed by Minnesota and Maine. Conclusions This national study demonstrates that there were a significant number of MND-associated deaths in the United States, with higher rates associated with certain patient demographics. The knowledge of these trends facilitates the design of appropriate services in areas of higher need, allowing for the introduction of pathways that support more suitable care and enhanced quality of life.