Functional seizures: care experiences of U.S. Veterans and their care partners

Functional seizures (FS) present substantial diagnostic and treatment challenges, particularly for Veterans with multiple medical and psychiatric comorbidities including post traumatic stress disorder, mood disorders and traumatic brain injury. To more effectively care for Veterans with FS and neuropsychiatric comorbidities, the US Department of Veterans Affairs (VA) neurology program office developed an interdisciplinary Mind Brain Program (MBP) to bridge the gap between neurology and mental health care for Veterans. In the context of expandeding MBP program development targeting Veterans with FS and complex comorbidities, this quality improvement project explored Veterans' lived experiences navigating FS diagnosis and treatment to identify opportunities for enhancing seizure care. Between April and July 2024, we conducted semi-structured interviews with 19 participants: 10 Veterans and 9 care partners. Using rapid qualitative analysis, we coded data into predefined themes to identify opportunities for improving care. Three major themes were identified within the predefined framework, with emergent subthemes. First, diagnostic challenges included clinicians' limited FS knowledge resulting in delayed video-EEG monitoring, and patient stigma, delaying diagnostic clarity. Second, limited access to specialty care was shaped by geographical barriers, lack of local expertise, scheduling difficulties, and reliance on community care referrals. Third, communication gaps within and between VA and community clinicians contributed to fragmented care, duplicated testing, and increased care partner burden. Findings are limited by a small sample from a single health system and by reliance on interview notes. Despite these limitation, findings highlight opportunities to improve FS care through standardized diagnostic pathways, enhanced clinician and patient education, strengthened communication within and between VA and community, and formal inclusion of care partners. These results can inform ongoing efforts to optimize FS care across the VA system.