brain injuries (TBI), intense physical activity and stress during service that might act as triggers and potential exposure to viruses or bacteria during deployment. Whatever the causes, providing comprehen- sive care for ALS patients is notoriously difficult. Previous survey-based studies of ALS patients have found a high preva- lence of symptoms and a high prevalence of untreated symptoms. No prior studies have specifically examined veteran status as it relates to these symptoms, however. One way in which the VA is improving care is through the recently passed Elizabeth Dole Act, which expands in-home support, explained Howard, a physiatrist and professor in the Department of Rehabilitation Medicine at University of Washington Medical and medical co- director of the ALS Center of Excellence at the VA Puget Sound Healthcare System, both in Seattle. The current research focused on understanding symptom burden and care experiences among veterans already diagnosed with ALS. The study team conducted the analysis because the ALS veteran advocacy community holds the VA accountable and reminds them the VA’s work starts and ends with veterans, Howard pointed out. “They introduced us to the Morris ALS Principles, a document created by people with lived experience to outline expectations for how the health care and scientific communities should engage and ensure work is based on the needs and preferences of this community,” she said. For the study, the researchers created a custom online survey with questions about symptom prevalence and management as well as care satisfaction. Then, a survey link was emailed to all veterans with an ICD-10 diagnosis of ALS in the VA if an email address was available in the electronic health record. The researchers received responses from 413 participants receiving VA and non VA care, a 16% response rate. Overall, the survey found that veterans with ALS receive comprehensive symptom-based care within the national VA healthcare system and report high levels of satisfaction. Compared to previous surveys of U.S. patients with ALS, respondents reported high care satisfaction and higher prevalence of treatment of symptoms. Self-reported outcomes, including treat- ment, education and sat- isfaction, were better for veterans receiving care exclusively within the VA compared to those receiv- ing care at both VA and non-VA facilities or receiv- ing care exclusively at non- VA facilities, study authors reported. “This study reinforces the findings of the 2024 National Academies report “Living With ALS,” which states, ‘VA is a bright spot in the landscape of ALS care,’” Howard said. “It highlights the value of highly interdis- ciplinary and integrated care delivered within our fed- eral health care system. While we are always working to improve, I am proud of the unique and important work we are doing to support veterans and caregivers through this journey.” “VA is a mission driven organization, and veterans in the ALS clinic I work at often tell me they notice this difference when they transfer from private sector care,” she added. “Our VA model of ALS care is unique as it is highly integrated, proactive, anticipatory and built within a rehabilitative framework. We strive to provide holistic, person centered care and equipment to veterans and caregivers and to make sure they have what they need even before they realize they need it.” ALS, often called Lou Gehrig’s disease for the professional baseball Hall of Famer who had it, is a progressive neurodegenerative disease that destroys motor neurons in the brain and spinal cord. Ultimately, it causes fatal muscle weakness, paralysis and respiratory failure. Early symptoms include muscle twitching, cramping, and general weakness, which worsen over time. While 90-95% of cases are sporadic not familial, the exact causes are unknown, although genetic, autoimmune and environmental factors are suspected. The symptoms are extremely challenging as ALS attacks upper and lower motor neurons, resulting in loss of voluntary movement, including walking, speaking, eating and breathing. It usually spreads regionally from the onset site, advancing from mild, focal weakness to widespread paralysis and, eventually, respiratory failure. Life expectancy is usually 3-5 years after symptom onset. While there is no cure for ALS, treatment is available 4 2 Dr. Ileana Howard with a patient. SOURCE: VA
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