Abstract Details

Title Impact of Prolonged Seizures on Patients’ and Caregivers’ Quality of Life

Topic Epilepsy/Clinical Neurophysiology (EEG)

Presentation(s) P1 - Poster Session 1 (11:45 AM-12:45 PM)

Poster/Presentation
Number 9-014

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.

Authors/Disclosures
Danya K. Kaye PRESENTER	Mrs. Kaye has received personal compensation for serving as an employee of UCB Biopharma SRL. Mrs. Kaye has stock in UCB Biopharma SRL.
Michelle Manzo (UCB)	Ms. Manzo has received personal compensation for serving as an employee of UCB Pharma. Ms. Manzo has stock in UCB Pharma.
Andrea L. Wilkinson, BA	Ms. Wilkinson has received personal compensation for serving as an employee of UCB. Ms. Wilkinson has or had stock in UCB.
Cedric Laloyaux, PhD (UCBMedical Affairs Center of Expertise)	Dr. Laloyaux has received personal compensation for serving as an employee of UCB.
Rebecca Burns, PhD, PharmD	Dr. Burns has received personal compensation for serving as an employee of UCB. Dr. Burns has stock in UCB.
Jesus E. Pina-Garza, MD (Tristar Children's Specialists)	Dr. Pina-Garza has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Jazz. Dr. Pina-Garza has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurelis. Dr. Pina-Garza has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sk. Dr. Pina-Garza has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for UCB. Dr. Pina-Garza has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Analysis Group/Acadia. Dr. Pina-Garza has received personal compensation in the range of $50,000-$99,999 for serving on a Speakers Bureau for Same as consultant disclosure. Dr. Pina-Garza has received publishing royalties from a publication relating to health care.
Joseph I. Sirven, MD, FAAN (Mayo Clinic)	Dr. Sirven has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for UCB. Dr. Sirven has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurelis. Dr. Sirven has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Neurona. Dr. Sirven has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for AAN. Dr. Sirven has received publishing royalties from a publication relating to health care. Dr. Sirven has received personal compensation in the range of $10,000-$49,999 for serving as a Host/ Co producer with WJCT Public Media. Dr. Sirven has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant with Federal Aviation Administration .
Tanya Bhatia, UCB Patient Author	Ms. Bhatia has nothing to disclose.
Shalee Cunneen	Mrs. Cunneen has nothing to disclose.
Shelly Meitzler (TSC Alliance)	Shelly Meitzler has received personal compensation for serving as an employee of TSC Alliance.
Susan Linn, MSW	Ms. Linn has received personal compensation for serving as an employee of Epilepsy Foundation New England.

��ɫ��

��ɫ��