200 Section - What Matters Most in ALS Care: Results of a National Survey

The aim of the present study is to ascertain what aspects of treatment and care for ALS matter most to military Veterans with ALS enrolled for care within a nationalized U.S. healthcare system.

Design:

A custom questionnaire was developed within the Veterans Health Administration as part of ongoing quality improvement activities.  This questionnaire included an item inviting participants to select topics they would like prioritized as part of their ALS care from a list of nine topics.  An email was sent with a link to the survey regarding their experience with receiving ALS-related care. 

Results: Questionnaires were sent to 2,657 and responses were received from 413 individuals (16% response rate). The topic that was selected by most respondents (18%) was "support for my caregiver," followed by "home care services" and "quality of life support" (15% each). Responses more frequently emphasized in clinical practice guidelines (access to research and mental health support) were selected by fewer participants (12% and 4%, respectively). 


Conclusion: This study sampled a large population of Veterans with ALS within the nationalized VA health care system and provides insight into the priorities from the perspective of persons with lived experience. While this survey reflects a single point of time and one nationalized system of care, a similar approach could be adopted in other care systems or countries to ensure the care delivery is informed and guided by the needs and preferences of persons with lived experience. Furthermore, these responses underscore the central role of physical medicine & rehabilitation in the care of persons with ALS, given that physiatrists are uniquely qualified to guide interventions to meaningfully address the the top three priorities- caregiver support, home care services, and quality of life.