Abstracts

Rationale: The impact and associated burden of prolonged seizures (PS) on patients and caregivers is unknown. This study describes experiences of people with epilepsy (PwE) living with PS and their caregivers, identifies their unmet needs, determines greatest areas of burden, and assesses the impact of their condition on quality of life (QoL).

Methods: Quantitative and qualitative research was conducted to describe the burden of PS on PwE and caregivers from Sep 2023–Jan 2024. A mixed methods approach was used, including a pre-interview survey (~15 min) and qualitative interviews (90–120 min). Inclusion criteria: US-based PwE ≥ 18 years of age or caregivers of PwE ≥ 12 years of age; patients currently experiencing or with history of seizures that typically last ≥ 2 min and usually do not stop on their own or worsen over time.

Results: 35 participants completed the pre-interview survey and qualitative interviews (Table 1). PwE and caregivers experience a range of symptoms associated with PS (Figure 1). The impact of PS on emotional wellbeing and mental health were the biggest challenges mentioned by PwE. This is magnified by the impact on their caregivers and extended family unit. PS are reported as a key driver in worsening of QoL. Part of the increased burden is associated with frequency and emotional impact of emergency response. 25/35 (71%) participants reported they or their loved ones were currently experiencing PS. PwE currently experiencing PS are 12.7-times more likely to experience a seizure emergency, and 4-times more likely to call an ambulance (average of 11.3 seizure emergencies [n=24] and 3.2 ambulance callouts [n=22] per year vs 0.9 seizure emergencies and 0.8 ambulance callouts [n=9 for both] in PwE not currently experiencing PS). Increased burden of PS also involves the post-ictal recovery period. 29/35 (83%) participants correlated seizure duration with longer recovery time; even outside of hospitalization/emergency healthcare, these participants reported recovery time from PS between 0.5–3 days. Participants who did not report a correlation between seizure length and recovery time typically reported shorter recovery periods of up to a few hours and all reported seizures to be well-controlled. PwE reported the post-ictal recovery process as a challenge (physical injuries; feeling weak/tired; unable to return to work/care for others; other effects of PS). Living with PS has a profound effect on PwE and caregivers’ mental health. 26 (90%) of 29 participants who answered this question experienced anxiety and/or depression; 3 [10%] reported no significant mental health impact. 21/35 (60%) participants reported receiving medication/seeking therapy to help manage their mental health.

Conclusions: The health impact of PS on PwE and caregivers is profound. PS represent a significant burden to PwE and their families and negatively impact QoL. There is an opportunity to encourage discussion and build resources for social, emotional, and psychological support for PwE experiencing PS and their families.

Funding: UCB Pharma-sponsored