Multidisciplinary clinic attendance and patterns of care in the U.S. National ALS Registry, 2013–2023

Affiliates

D. Kevin Horton¹, Jaime Raymond¹, Theodore Larson¹, Stephen A. Goutman^2,3 & Paul Mehta¹

1. Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Atlanta, GA,USA,
2. Department of Neurology, University of Michigan, Ann Arbor, MI, USA
3. Scott Pranger ALS Center,University of Michigan, Ann Arbor, MI, USA

Journal

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Summary

This study examined multidisciplinary clinic (MDC) attendance and patterns of care among 4,764 U.S. National ALS Registry participants from 2013–2023. Overall, 77% of participants reported attending an MDC, and baseline characteristics were generally similar between attendees and non-attendees. Participants who attended MDCs were more likely to use evidence-based interventions, including noninvasive ventilation, feeding tubes, communication devices, riluzole, and edaravone, and were also more likely to complete advance directives, undergo genetic testing, and participate in research. MDC attendance was also associated with fewer emergency department visits among those reporting emergency care and shorter hospital stays. These findings provide additional evidence that multidisciplinary ALS care is associated with greater use of recommended treatments and specialized care processes and reduced intensity of healthcare utilization, supporting efforts to expand access to MDC care.

Link to Paper

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