- Although many patients experiencing sudden unexpected death in epilepsy (SUDEP) had risk factors, some were considered to have treatment-responsive or benign epilepsies.
Why this matters
- Better understanding of SUDEP can inform counseling, prevention.
- Of North American SUDEP Registry (NASR) participants, 237 (44.7%) definite and probable cases of SUDEP.
- Median age of SUDEP decedents: 26 (range, 1-70) years; 38% female.
- Of 143 evaluable decedents, 40% had generalized epilepsy, 60% had focal epilepsy.
- SUDEP occurred across epilepsy types, from benign epilepsy with centrotemporal spikes to intractable epileptic encephalopathies.
- SUDEP case features:
- 93% unwitnessed.
- 70% asleep at time of death.
- 69% found prone.
- 37% had taken last dose of antiseizure medications.
- 11% had not been prescribed antiseizure medications.
- Sizable minorities of decedents had 1-10 lifetime generalized tonic-clonic seizures (29%) or none at all (4%).
- 15% of decedents considered seizure-free at time of death.
- In an editorial, Jorge G. Burneo, MD, MSPH, FAAN, FRCPC, writes, “The findings of the study are of concern for those caring for patients with epilepsy. … SUDEP does not occur only in those with ‘severe’ or ‘catastrophic’ forms of epilepsy, or those whose seizures are difficult to control; it can occur to anybody with epilepsy. … The important take-home message from this study is that from now on, clinicians should start conversations about SUDEP with their patients with epilepsy earlier rather than later. Education of patients and caregivers would be critical to avoid potential risk factors for SUDEP, including lack of medication adherence or certain behaviors, like drinking alcohol excessively.”
- Retrospective cohort study of all 530 cases referred to NASR October 2011 through June 2018.
- Main outcome: SUDEP characteristics (medical records, death scene investigation reports, autopsy reports, next-of-kin interviews).
- Funding: Finding a Cure for Epilepsy and Seizures; Lundbeck; American Epilepsy Society.
- Referral, recall biases.
- Lack of detailed information for some cases.