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October 16, 2018; 91 (16) Article

Nocturnal supervision and SUDEP risk at different epilepsy care settings

Marije van der Lende, Dale C. Hesdorffer, Josemir W. Sander, Roland D. Thijs
First published September 21, 2018, DOI: https://doi.org/10.1212/WNL.0000000000006356
Marije van der Lende
From the Stichting Epilepsie Instellingen Nederland (SEIN) (M.v.d.L., J.W.S., R.D.T.), Heemstede; Leiden University Medical Center (LUMC) (M.v.d.L., R.D.T.), Netherlands; GH Sergievsky Center and Department of Epidemiology (D.C.H.), Columbia University, New York, NY; NIHR University College London Hospitals Biomedical Research Centre (J.W.S., R.D.T.), UCL Institute of Neurology, Queen Square, London, and Chalfont Centre for Epilepsy, Chalfont St Peter, UK.
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Dale C. Hesdorffer
From the Stichting Epilepsie Instellingen Nederland (SEIN) (M.v.d.L., J.W.S., R.D.T.), Heemstede; Leiden University Medical Center (LUMC) (M.v.d.L., R.D.T.), Netherlands; GH Sergievsky Center and Department of Epidemiology (D.C.H.), Columbia University, New York, NY; NIHR University College London Hospitals Biomedical Research Centre (J.W.S., R.D.T.), UCL Institute of Neurology, Queen Square, London, and Chalfont Centre for Epilepsy, Chalfont St Peter, UK.
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Josemir W. Sander
From the Stichting Epilepsie Instellingen Nederland (SEIN) (M.v.d.L., J.W.S., R.D.T.), Heemstede; Leiden University Medical Center (LUMC) (M.v.d.L., R.D.T.), Netherlands; GH Sergievsky Center and Department of Epidemiology (D.C.H.), Columbia University, New York, NY; NIHR University College London Hospitals Biomedical Research Centre (J.W.S., R.D.T.), UCL Institute of Neurology, Queen Square, London, and Chalfont Centre for Epilepsy, Chalfont St Peter, UK.
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Roland D. Thijs
From the Stichting Epilepsie Instellingen Nederland (SEIN) (M.v.d.L., J.W.S., R.D.T.), Heemstede; Leiden University Medical Center (LUMC) (M.v.d.L., R.D.T.), Netherlands; GH Sergievsky Center and Department of Epidemiology (D.C.H.), Columbia University, New York, NY; NIHR University College London Hospitals Biomedical Research Centre (J.W.S., R.D.T.), UCL Institute of Neurology, Queen Square, London, and Chalfont Centre for Epilepsy, Chalfont St Peter, UK.
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Nocturnal supervision and SUDEP risk at different epilepsy care settings
Marije van der Lende, Dale C. Hesdorffer, Josemir W. Sander, Roland D. Thijs
Neurology Oct 2018, 91 (16) e1508-e1518; DOI: 10.1212/WNL.0000000000006356

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Abstract

Objective To estimate the incidence of sudden unexpected death in epilepsy (SUDEP) in people with intellectual disabilities in residential care settings and to ascertain the effects of nocturnal seizures and nocturnal supervision on SUDEP risk.

Methods We conducted a nested case-control study reviewing records of all people who died at 2 residential care settings over 25 years. Four controls per case were selected from the same population, matched on age (±5 years) and residential unit. Nocturnal supervision was graded in 3 categories: (1) no supervision; (2) a listening device or a roommate or physical checks at least every 15 minutes; and (3) 2 of the following: a listening device, roommate, additional device (bed motion sensor/video monitoring), or physical checks every 15 minutes. Outcome measures were compared using Mann-Whitney U tests and Fisher exact tests.

Results We identified 60 SUDEP cases and 198 matched controls. People who died of SUDEP were more likely to have nocturnal convulsive seizures in general (77% of cases vs 33% of controls, p < 0.001) and a higher frequency of nocturnal convulsive seizures. Total SUDEP incidence was 3.53/1,000 patient-years (95% confidence interval [CI] 2.73–4.53). The incidence differed among centers: 2.21/1,000 patient-years (95% CI 1.49–3.27) vs 6.12/1,000 patient-years (95% CI 4.40–8.52). There was no significant difference in nocturnal supervision among cases and controls, but there was a difference among centers: the center with a lowest grade of supervision had the highest incidence of SUDEP.

Conclusions Having nocturnal seizures, in particular convulsions, may increase SUDEP risk. Different levels of nocturnal supervision may account for some of the difference in incidence.

Glossary

CCE=
Chalfont Centre for Epilepsy;
SEIN=
Stichting Epilepsie Instellingen Nederland;
SUDEP=
sudden unexpected death in epilepsy

Footnotes

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

  • Editorial page 731

  • Received January 23, 2018.
  • Accepted in final form July 10, 2018.
  • © 2018 American Academy of Neurology
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Disputes & Debates: Rapid online correspondence

  • Author response to Dr. Sethi
    • Marije van der Lende, Medical doctor, PhD Candidate, Leiden University Medical Center (Leiden, Netherlands)
    • Roland D. Thijs, Neurologist, Stichting Epilepsie Instellingen Nederland (Heemstede, Netherlands)
    Submitted November 03, 2018
  • Nocturnal supervision and SUDEP risk
    • Nitin K. Sethi, Associate Professor of Neurology, New York-Presbyterian Hospital, Weill Cornell Medical Center (New York, NY)
    Submitted October 21, 2018
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