Abstracts

COAST Study: Cognitive Outcomes After Super Refractory Status Epilepticus: Multi-centre Retrospective Study

Abstract number : 2.226
Submission category : 4. Clinical Epilepsy / 4B. Clinical Diagnosis
Year : 2024
Submission ID : 308
Source : www.aesnet.org
Presentation date : 12/8/2024 12:00:00 AM
Published date :

Authors :
Presenting Author: Bahar Madani, BS Student – Oregon Health and Science University

Audrey Oliger, MD – Oregon Health & Science University (OHSU)
Manaz Rezayee, BS – Oregon Health and Science University
Hannah Gray, M.Sc. Student – Western University
Teneille Gofton, MD – London Health Sciences Centre (LHSC)
Marissa Kellogg, MD – Oregon Health & Science University (OHSU)

Rationale: The Cognitive Outcomes After Super-Refractory Status Epilepticus (COAST) study seeks to uncover the neuropsychological impact of Super-Refractory Status Epilepticus (SRSE), encompassing subtypes like New Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES). Evidence on long term neuropsychological outcomes after SRSE and NORSE remains limited due to challenges assessing survivors of rare, disabling conditions after discharge.

Methods: We performed a retrospective case series of all adult patients with NORSE admitted to OHSU after 2006 who underwent subsequent formal neuro-psychological testing (NPT).


Results: 7 of 27 NORSE (25.9%) patients admitted to OHSU between 2006-2023 met the eligibility criteria of having completed NPT. The median age at onset of NORSE in the 7 study subjects was 24 years (range 18 to 33) and 2 were female. Duration of SRSE was median 1 day (range 1-5 days). Hospitalization duration ranged from 4 to 77 days (median 7 days). Upon discharge, the median number of anti-seizure medications (ASMs) was 5 (range 1-18).



Median time to NPT was 60 months (range 16-133 months) and patients were prescribed a median number of 6 ASMs (range 3-11) at the time of NPT. Diagnostic impressions from the latest NPT of NORSE patients reveal a spectrum of neurological and psychiatric sequelae, including drug-resistant focal epilepsy (DRE), major neurocognitive disorder with significant memory impairment, attention deficit/hyperactivity disorder (inattentive type), and adjustment disorder with mixed anxiety and depressed mood, associated with symptoms of impaired quality of life (QoL) and sleep disturbance. Premorbid functioning was estimated to be “average to borderline impaired” in all 7 subjects but declined to “below average” after NORSE. Specific NPT domains that were notably impaired included memory, attention, and processing speed.


Conclusions: This study of neuro-psychological testing results in NORSE survivors revealed adverse mental health outcomes are common and cognitive domains most notably impaired after NORSE include memory, attention and processing speed. This single center case series will be integrated into a larger multi-center international COAST study of NPT outcomes following SRSE. The COAST study will advance our understanding of cognitive, mental health, functional and QoL outcomes in SRSE and NORSE patients, with the potential to improve care and management strategies for this challenging neurological condition.

Funding: EXITO (UL1GM118964, RL5GM118963, TL4GM118965)

Clinical Epilepsy