Literature DB >> 16421121

Sudden unexpected death in epilepsy (SUDEP): don't ask, don't tell?

B Morton1, A Richardson, S Duncan.   

Abstract

BACKGROUND: The National Institute for Clinical Excellence in the UK has issued guidelines stating all individuals with epilepsy be given information about sudden unexpected death in epilepsy (SUDEP).
METHODS: We conducted a survey of current practice among UK neurologists, using a questionnaire sent to all practising neurologists in the UK listed on the Association of British Neurologists database, asking under what circumstances they told patients about SUDEP.
RESULTS: Of the validated respondents, 5% discussed SUDEP with all patients, 26% with a majority, 61% with a few, and 7.5% with none. The commonest reasons for SUDEP to be discussed were the patient asking about it and the neurologist counselling people with known risk factors for SUDEP.
CONCLUSIONS: The variation we found, although not necessarily in tune with the guidelines, reflects the variation in patients' need for knowledge about their condition.

Entities:  

Mesh:

Year:  2006        PMID: 16421121      PMCID: PMC2077594          DOI: 10.1136/jnnp.2005.066852

Source DB:  PubMed          Journal:  J Neurol Neurosurg Psychiatry        ISSN: 0022-3050            Impact factor:   10.154


  7 in total

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2.  Do we always need to tell patients the truth?

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Review 3.  Sudden unexpected death in epilepsy (SUDEP): risk factors and case control studies.

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5.  Information needs of cancer patients in west Scotland: cross sectional survey of patients' views.

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6.  Review of the legal obligations of the doctor to discuss Sudden Unexplained Death in Epilepsy (SUDEP)--a cohort controlled comparative cross-matched study in an outpatient epilepsy clinic.

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7.  Life expectancy in people with newly diagnosed epilepsy.

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  7 in total
  15 in total

Review 1.  Treatments for the prevention of Sudden Unexpected Death in Epilepsy (SUDEP).

Authors:  Melissa J Maguire; Cerian F Jackson; Anthony G Marson; Sarah J Nolan
Journal:  Cochrane Database Syst Rev       Date:  2016-07-19

2.  Socioeconomic disparities in SUDEP in the US.

Authors:  Esma Cihan; Dale C Hesdorffer; Michael Brandsoy; Ling Li; David R Fowler; Jason K Graham; Michael Karlovich; Elizabeth J Donner; Orrin Devinsky; Daniel Friedman
Journal:  Neurology       Date:  2020-04-23       Impact factor: 9.910

Review 3.  Research implications of the Institute of Medicine Report, Epilepsy Across the Spectrum: Promoting Health and Understanding.

Authors:  Dale C Hesdorffer; Vicki Beck; Charles E Begley; Malachy L Bishop; Sandra Cushner-Weinstein; Gregory L Holmes; Patricia O Shafer; Joseph I Sirven; Joan K Austin
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4.  Epilepsy: A new guideline on sudden unexpected death in epilepsy.

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5.  Sudden unexpected death in epilepsy: knowledge and experience among U.S. and Canadian neurologists.

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6.  Sudden unexpected death in epilepsy (SUDEP): a pilot study on truth telling among Italian epileptologists.

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Review 7.  Abbreviated report of the NIH/NINDS workshop on sudden unexpected death in epilepsy.

Authors:  L J Hirsch; E J Donner; E L So; M Jacobs; L Nashef; J L Noebels; J R Buchhalter
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8.  Discussing sudden unexpected death in epilepsy (SUDEP) with patients: practices of health-care providers.

Authors:  Wendy R Miller; Neicole Young; Daniel Friedman; Janice M Buelow; Orrin Devinsky
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Review 9.  Would people living with epilepsy benefit from palliative care?

Authors:  Benzi M Kluger; Cornelia Drees; Thomas R Wodushek; Lauren Frey; Laura Strom; Mesha-Gay Brown; Jacquelyn L Bainbridge; Sarah N Fischer; Archana Shrestha; Mark Spitz
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10.  Treatments for the prevention of Sudden Unexpected Death in Epilepsy (SUDEP).

Authors:  Melissa J Maguire; Cerian F Jackson; Anthony G Marson; Sarah J Nevitt
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