Who to target in sudden unexpected death in epilepsy prevention and how? Risk factors, biomarkers, and intervention study designs

• Published in: Epilepsia (Copenhagen) Vol. 57; no. S1; pp. 4 - 16
• Main Authors: Tomson, Torbjörn, Surges, Rainer, Delamont, Robert, Haywood, Serena, Hesdorffer, Dale C.
• Format: Journal Article Conference Proceeding
• Language: English
• Published: United States Wiley Subscription Services, Inc 01.01.2016
• Subjects: Age of Onset; Anticonvulsants - therapeutic use; Biomarkers; Clinical trials; Death, Sudden - epidemiology; Death, Sudden - prevention & control; Electrocardiography; Electroencephalography; Epilepsy; Epilepsy - drug therapy; Epilepsy - epidemiology; Epilepsy - physiopathology; Epilepsy, Tonic-Clonic - drug therapy; Epilepsy, Tonic-Clonic - epidemiology; Epilepsy, Tonic-Clonic - physiopathology; Humans; Incidence; Intervention; Medicin och hälsovetenskap; Prevention; Risk Assessment; Risk Factors; Self Care; Study design; Sudden unexpected death in epilepsy; Time Factors; Prevention; Study design; Risk factors; Sudden unexpected death in epilepsy; Incidence
• ISSN: 0013-9580; 1528-1167; 1528-1167
• DOI: 10.1111/epi.13234

Summary The risk of dying suddenly and unexpectedly is increased 24‐ to 28‐fold among young people with epilepsy compared to the general population, but the incidence of sudden unexpected death in epilepsy (SUDEP) varies markedly depending on the epilepsy population. This article first reviews risk factors and biomarkers for SUDEP with the overall aim of enabling identification of epilepsy populations with different risk levels as a background for a discussion of possible intervention strategies. The by far most important clinical risk factor is frequency of generalized tonic–clonic seizures (GTCS), but nocturnal seizures, early age at onset, and long duration of epilepsy have been identified as additional risk factors. Lack of antiepileptic drug (AED) treatment or, in the context of clinical trials, adjunctive placebo versus active treatment is associated with increased risks. Despite considerable research, reliable electrophysiologic (electrocardiography [ECG] or electroencephalography [EEG]) biomarkers of SUDEP risk remain to be established. This is an important limitation for prevention strategies and intervention studies. There is a lack of biomarkers for SUDEP, and until validated biomarkers are found, the endpoint of interventions to prevent SUDEP must be SUDEP itself. These interventions, be they pharmacologic, seizure‐detection devices, or nocturnal supervision, require large numbers. Possible methods for assessing prevention measures include public health community interventions, self‐management, and more traditional (and much more expensive) randomized clinical trials.