Symptom Burden and Care Satisfaction in US Military Veterans With ALS: Results of a National Survey

ABSTRACT Introduction/Aims Amyotrophic lateral sclerosis (ALS) affects military veterans at a higher rate than the general civilian population. The aim of the present study is to assess symptom burden and satisfaction with care among persons with ALS care enrolled in the US Veterans Health Administration (VA). Methods A custom online survey was created with questions about symptom prevalence and management as well as care satisfaction. A survey link was sent by email to all veterans with an ICD ‐10 diagnosis of ALS in the VA for whom an email address was available in the electronic health record. Results Responses were received from 413 individuals (16% response rate). Respondents reported high care satisfaction and higher prevalence of treatment of symptoms compared to prior surveys of persons with ALS in the United States. Self‐reported outcomes, including treatment, education, and satisfaction, were better for Veterans receiving care exclusively within the VA compared to those receiving care at both VA and non‐ VA facilities or receiving care exclusively at non‐ VA facilities. Areas for further improvement identified in the survey include education on genetic testing and research and management of non‐motor symptoms. Discussion This survey indicates that, overall, veterans with ALS receive comprehensive symptom‐based care within the nationalized VA care system and report high levels of satisfaction. Furthermore, this study provides baseline data and findings that may be used for quality improvement efforts across a large healthcare system and may serve as a model for similar efforts in other health systems.