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July 11, 2017; 89 (2) Article

The incidence of SUDEP

A nationwide population-based cohort study

Olafur Sveinsson, Tomas Andersson, Sofia Carlsson, Torbjörn Tomson
First published June 7, 2017, DOI: https://doi.org/10.1212/WNL.0000000000004094
Olafur Sveinsson
From the Department of Neurology (O.S., T.T.), Karolinska University Hospital; Department of Clinical Neuroscience (O.S., T.T.) and Epidemiology Unit, Institute of Environmental Medicine (T.A., S.C.), Karolinska Institutet, Stockholm; and Center for Occupational and Environmental Medicine (T.A.), Stockholm County Council, Sweden.
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Tomas Andersson
From the Department of Neurology (O.S., T.T.), Karolinska University Hospital; Department of Clinical Neuroscience (O.S., T.T.) and Epidemiology Unit, Institute of Environmental Medicine (T.A., S.C.), Karolinska Institutet, Stockholm; and Center for Occupational and Environmental Medicine (T.A.), Stockholm County Council, Sweden.
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Sofia Carlsson
From the Department of Neurology (O.S., T.T.), Karolinska University Hospital; Department of Clinical Neuroscience (O.S., T.T.) and Epidemiology Unit, Institute of Environmental Medicine (T.A., S.C.), Karolinska Institutet, Stockholm; and Center for Occupational and Environmental Medicine (T.A.), Stockholm County Council, Sweden.
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Torbjörn Tomson
From the Department of Neurology (O.S., T.T.), Karolinska University Hospital; Department of Clinical Neuroscience (O.S., T.T.) and Epidemiology Unit, Institute of Environmental Medicine (T.A., S.C.), Karolinska Institutet, Stockholm; and Center for Occupational and Environmental Medicine (T.A.), Stockholm County Council, Sweden.
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Citation
The incidence of SUDEP
A nationwide population-based cohort study
Olafur Sveinsson, Tomas Andersson, Sofia Carlsson, Torbjörn Tomson
Neurology Jul 2017, 89 (2) 170-177; DOI: 10.1212/WNL.0000000000004094

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Abstract

Objective: To identify all cases of sudden unexpected death in epilepsy (SUDEP) among people in Sweden during 1 year and to determine the SUDEP incidence in relation to age, sex, and psychiatric comorbidity.

Methods: We included all individuals with a hospital-based ambulatory care or hospital discharge diagnosis of epilepsy in the Swedish National Patient Registry during 1998–2005 who were alive on January 1, 2008. Deaths during 2008 were identified by linkage to the National Cause of Death Registry. Death certificates, medical charts, and police and autopsy reports were extensively reviewed to identify SUDEP cases.

Results: Of 57,775 epilepsy patients alive on January 1, 2008, 1,890 died (3.3%) during 2008. Of these, 99 met the Annegers SUDEP criteria (49 definite, 19 probable, and 31 possible). SUDEP accounted for 5.2% of all deaths and 36% of deaths in the 0–15 years age group. The incidence of definite/probable SUDEP was 1.20/1,000 person-years, and higher in men (1.41) than in women (0.96). All SUDEP cases <16 years were in boys. SUDEP incidence at ages <16, 16–50, and >50 years was 1.11, 1.13, and 1.29, respectively, per 1,000 person-years. The incidence was 5-fold increased among female patients with psychiatric comorbidities compared to those without. Epilepsy was mentioned on the death certificate in only 62 of the 99 (63%) SUDEP cases.

Conclusions: Methods relying on death certificates underestimate SUDEP incidence. SUDEP risk has been underestimated especially in boys and in older people regardless of sex. Patients with psychiatric comorbidities, women in particular, are at increased SUDEP risk.

GLOSSARY

CI=
confidence interval;
ICD=
International Classification of Diseases;
SNPR=
Swedish National Patient Register;
SUDEP=
sudden unexpected death in epilepsy

Footnotes

  • Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.

  • Supplemental data at Neurology.org

  • Editorial, page 114

  • Received January 23, 2017.
  • Accepted in final form March 22, 2017.
  • © 2017 American Academy of Neurology
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