Objective:

Describe experiences of people with epilepsy (PwE) living with prolonged seizures (PS) and their caregivers, identify unmet needs, determine greatest areas of burden, and assess impact on quality of life (QoL).

Background:

Impact and associated burden of PS on patients and caregivers are unknown.

Design/Methods:

Quantitative and qualitative research on PwE and caregivers using mixed methods approach (~15-min web-survey; 90-120-min interviews); Sep 2023-Jan 2024. US-based PwE aged ≥18 years or caregivers of PwE aged ≥12 years; patients currently experiencing/with recent history of PS, defined as seizures typically lasting ≥2 min or usually not stopping on their own/worsening over time.

Results:

35 PwE/caregivers participated. Living with PS has profound negative impact on QoL for PwE and caregivers across multiple areas – including work/career, social life/relationships, mental health/emotional wellbeing, physical/cognitive impacts. However, the most challenging impact on PwE and caregivers reported was on emotional wellbeing/mental health. When asked whether they experience anxiety/depression, 26/29 (90%) participants who answered experienced anxiety/depression; 3 (10%) reported no significant mental health impact. 21/35 (60%) participants reported receiving medication/seeking therapy to manage mental health. Increased burden of PS was associated with frequency/emotional impact of emergency response. 25/35 (71%) participants reported they/their loved ones were currently experiencing PS. PwE currently experiencing PS were 12.7-times more likely to experience seizure emergencies, and 4-times more likely to call an ambulance than those not currently experiencing PS. PwE reported post-ictal recovery process as a challenge (physically/cognitively/emotionally). 29/35 (83%) participants correlated seizure duration with longer recovery time; even outside of hospitalization/emergency healthcare, reported recovery time from PS ranged from 0.5-3 days. Participants who did not report a correlation typically reported shorter recovery periods (<few hours) and all reported well-controlled seizures.

Conclusions:

The negative health impact and burden of PS on patients/caregivers is profound and results in reduced QoL. Better social/emotional/psychological support is needed for PwE and families.