SUDEP Amer Aboukasm, MD, FACP

S UDDEN U nexpected D eath in E pilepsy P atients

Increased Mortality in Epilepsy (2-3 fold greater than general population) Direct – SUDEP – Accidents – Status Epilepticus Indirect – Underlying brain disease/co-morbidities – Suicide – Complication of treatment (AEDs, surgery…)

SUDEP Definition (FDA/Burrouhgs-Wellcome 1993) Patient has epilepsy (recurrent unprovoked Sz) Unexpected death while in good health Death occurred suddenly (minutes) Death occurred during benign circumstances No obvious medical cause of death on autopsy Death not due to seizure or status epilepticus

SUDEP Definition (FDA/Burrouhgs-Wellcome 1993) Definite SUDEP: meet all 5 criteria Probable SUDEP: meet criteria except no autopsy Possible SUDEP: insufficient evidence, no autopsy Not SUDEP: other cause of death established

SUDEP Increased recognition Unanticipated death Traumatic to families and care givers “Unknown” incidence “Unknown” burden on public health

US Institute of Medicine Recent report on public health on epilepsy Emphasis on SUDEP Recognizes deficiencies in measuring its occurrence (Med Records, coroner offices and medical examiners)

SUDEP (Incidence) Incidence vary widely Small Communities-based studies – Methods varies substantially Population-based studies – Challenges in obtaining data (Underestimate)

SUDEP (Incidence) A better Understanding Incidence of SUDEP – Helps measure the “Public Health Burden” – Helps prioritize medical research & prevention – Helps inform people (pts and caregivers) on risks

SUDEP (Incidence) Thurman et al. Epilepsia 2014 Literature search Jan 2014 – 199 references – 17 relevant population-based studies – 7 studies used for the meta-analysis – 3 level 2 – 4 level 3

SUDEP (incidence) Crude annual rate per population 0.81 Crude annual rate per 1000 PWE 1.16

SUDEP Higher incidence in – Medically refractory epilepsy – Mentally challenged with epilepsy – Recent generalized tonic-clonic seizure

SUDEP (incidence) Incidence is Underestimated (Undercounting) Extent of underestimation is “unknown” Low incidence in over 50 of age – Undercounting due to other co-morbidities Low incidence in young children – Adults supervision/assistance during seizures – Misclassifying SIDS

SUDEP Implication for further research & studies – Prospective, Medical examiners, coroner offices Identify modifiable risk factors Development of preventive strategies.

SUDEP CONTROVERSIES UK N.I.C.E. Recommends: “All individual with epilepsy should be informed about SUDEP” 5% of neurologists discuss SUDEP with all pts 66% “ “ “ “ few or none US AES and Epilepsy foundation have similar recommendations 7% of neurologists discuss SUDEP with all pts 66% “ “ “ “ few or none

SUDEP physicians concerns -Creating fear anxiety and distress -Uncertainty about the magnitude of risks in individual patient -Inability to prevent it -Adverse effects on the Dr-patient relationship

SUDEP controversies Should we & when to educate Some or All patients and/or Caregivers

SUDEP controversies Research and surveys strongly confirm that the patients and their caregivers desire is to learn about SUDEP and early. Patients and caregivers believe that the discussion about SUDEP should follow how parents learn about SIDS. Reducing its rate to 1/3 after the 80s campaign of “Back-to-sleep”

Sudden Unexpected Death in Epilepsy: Assessing the Public Health Burden* Estimated annual incidence rate of 1.2 cases SUDEP per 1,000 patients with epilepsy Lower risk in young children; higher risk in later adolescence and younger adulthood Risk varies greatly among individuals, types of epilepsy, and severity of seizures In U.S. population, among common neurological disorders, overall years of potential life lost due to SUDEP rank second only to stroke. Thurman et al, 2014, DOI: /epi.12666