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A five-year, $3.1 million grant to study preventive strategies for sudden unexpected death in epilepsy (SUDEP) has been awarded to UTHealth Houston by the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke. Nuria Lacuey Lecumberri, MD, PhD, associate professor in the Department of Neurology with McGovern Medical School at UTHealth Houston, is principal...

Objective We assessed mortality, sudden unexpected death in epilepsy (SUDEP), and standardized mortality ratio (SMR) among adults treated with cenobamate during the cenobamate clinical development program. Methods We retrospectively analyzed deaths among all adults with uncontrolled focal (focal to bilateral tonic-clonic [FBTC], focal impaired awareness, focal aware) or primary generalized tonic-clonic (PGTC) seizures who received...

    Read the commentary in Epilepsia.

Read the full article in the April 2023 issue of Neurology. Abstract Background and Objectives The genetic developmental and epileptic encephalopathies (DEEs) comprise a large group of severe epilepsy syndromes, with a wide phenotypic spectrum. Currently, the rates of convulsive status epilepticus (CSE), nonconvulsive status epilepticus (NCSE), and sudden unexplained death in epilepsy (SUDEP) in these...

Sudden unexpected death in epilepsy (SUDEP) is the leading cause of epilepsy-related death in children and adults living with epilepsy. Several recent clinical practice guidelines have recommended that all individuals living with epilepsy and their caregivers be informed about SUDEP as a part of routine epilepsy counseling. Furthermore, several studies over the last two decades...

Purpose To understand the experiences of bereaved relatives of individuals who passed due to sudden unexpected death in epilepsy (SUDEP) and to explore the impacts of death in their lives. Methods The principles of fundamental qualitative description informed all design decisions. Stratified purposeful sampling included 21 bereaved relatives (parent, sibling, or spouse/partner), aged at least...

Sudden unexpected death in epilepsy (SUDEP) is a major cause of death in people with epilepsy (PWE). Postictal apnea leading to cardiac arrest is the most common sequence of terminal events in witnessed cases of SUDEP, and postconvulsive central apnea has been proposed as a potential biomarker of SUDEP susceptibility. Research in SUDEP animal models...

Objective We aimed to characterize (1) the caregiver experience of learning about sudden unexpected death in epilepsy (SUDEP), and (2) caregiver preferences for SUDEP risk disclosure. Methods We distributed a 24-question survey to caregivers of children with epilepsy. Free text questions were analyzed using a rapid qualitative analysis approach. Results Two hundred and twelve caregivers...

Objective: Because of SUDEP (Sudden and unexpected death in epilepsy) and other direct consequences of generalized tonic-clonic seizures, the use of efficient seizure detection tool may be helpful for patients, relatives and caregivers. We aimed to evaluate an under-mattress detection tool (EMFIT®) in real-life hospital conditions, in particular its sensitivity and false alarm rate (FAR), as...

Objective: Medication adherence is considered an important risk factor for Sudden Unexpected Death in Epilepsy (SUDEP) although measurement accuracy is difficult. Using prescription dispensations, this study aims to estimate antiseizure medication (ASM) adherence and identify adherence patterns that influence epilepsy mortality. Methods: Retrospective cohort study of tertiary epilepsy outpatients seen at St Vincent’s Hospital (Melbourne), Victoria, Australia,...

Objective Despite increased awareness of the serious epilepsy complication sudden unexpected death in epilepsy (SUDEP), a substantial population of people with epilepsy (PWE) remain poorly informed. Physicians indicate concern that SUDEP information may adversely affect patients’ health and quality of life. We examined SUDEP awareness and the immediate and long-term effects of providing SUDEP information...

Objectives To characterize the effects of sudden unexpected death in epilepsy (SUDEP) counselling on epilepsy-related childcare behaviour and practices, and emotional distress, measured by the Depression, Anxiety and Stress scale-21 (DASS-21), among parents of children with epilepsy (CWE), and to obtain feedback about SUDEP counselling. Methods We conducted a single-arm, pre- and post-intervention study design. We enrolled...

Sudden unexpected death in epilepsy (SUDEP) is a leading epilepsy related cause of death. Researchers have highlighted the similarities between SUDEP and Sudden infant death syndrome (SIDS) but perinatal risk factors such as those identified for SIDS, have not been assessed previously for SUDEP. We carried out a population-based case-control of 58 SUDEP individuals and...

The prevalence of suicide in the United States has seen an increasing trend and is responsible for 1.6% of all mortality nationwide. While suicide has the potential to broadly impact the entire population, it has a substantially increased prevalence in persons with epilepsy (PWE) despite many of these individuals consistently seeing a health care provider....

This commentary published April 12, 2022 in Epilepsy Currents discussed publications related to two national studies conducted in Scotland and Denmark. Learn more

Abstract Objective: Our aim was to describe the risk factors known to be related to sudden unexpected death in epilepsy (SUDEP) that can be extracted from patients that utilizes an online seizure diary tool (SeizureTracker™). Method: We conducted a descriptive analysis of SeizureTracker™ users across factors relevant to SUDEP risk. We also compared our app-using cohort to...

Discussing mortality in epilepsy can be a major source of discomfort for people living with epilepsy, their families, and caregivers. Consequently, providers sometimes avoid discussing the subject, and those with epilepsy and their loved ones are not given valuable information to help them make informed choices about care, wellness, and lifestyle. Additionally, epilepsy-related deaths are...

Abstract Objective: To investigate the opinions and attitudes of neurologists on the counseling about sudden unexpected death in epilepsy (SUDEP) worldwide. Methods: Practicing neurologists from around the world were invited to participate in an online survey. On February 18th, 2021, we emailed an invitation including a questionnaire (using Google-forms) to the lead neurologists from 50 countries. The...

Abstract Background and Objectives Mortality is increased in epilepsy, but the important issue is that a proportion of epilepsy-related death is potentially preventable by optimized therapy and therefore needs to be identified. A new systematic classification of epilepsy-related mortality has been suggested to identify these preventable deaths. We applied this classification to an analysis of premature...

In this issue of Neurology®, Klovegard et al.1 examine epilepsy mortality using a wide-angle lens, looking beyond sudden unexpected death in epilepsy (SUDEP) to other direct and indirect causes of epilepsy-related deaths. They found that most deaths in children and adults <50 years old were directly or indirectly related to epilepsy. Thus, epilepsy may be the leading...