What helps? Patient-reported strategies for managing functional/dissociative seizures: a cross-sectional survey

The value of incorporating lived experience into research is increasingly recognised, however, traditional functional/dissociative seizure (FDS) treatment studies assess treatment efficacy prior to ascertaining real-world effectiveness. This study aimed to gather firsthand accounts from individuals about their personal experiences with treatments for FDS, including therapies, tools, strategies, and interventions most helpful regardless of formal treatment engagement.

We administered a brief online survey to adults who self-reported a diagnosis of FDS from a medical professional. Participants were recruited internationally through an open access questionnaire via social media and patient groups over a month-long period. The survey was also administered to past and present patients of The Alfred Hospital's functional seizures clinic.

Of 244 respondents, 64% had received treatment and 36% were untreated. The most prominent reason for non-treatment was nonreferral for treatment (73%). Receiving any treatment was associated with higher odds of seizure freedom for 6 months or more (OR = 3.15, 95% CI [1.04, 9.53]; p = 0.043). Two patient-nominated strategies were associated with seizure improvement: movement/exercise (aOR = 3.57, 95% CI [1.61-7.87]; q = 0.013) and cognitive reframing/CBT (aOR = 4.31, 95% CI [1.42-9.54]; q = 0.026). Regardless of receiving treatment or not, the top four strategies deemed most helpful for managing FDS were grounding/sensory strategies (46%), practical changes to home/school/work life (41%), breathing/breath work (31%), and movement/exercise/physical activity (27%).

Individuals who receive treatment for FDS appear more likely to have improvement or resolution of their seizures, yet most untreated individuals report never having been referred for treatment. While findings are observational and hypothesis generating, movement/exercise represents a potential candidate for prospective evaluation.