Preferences of patients for discussing sudden unexpected death in epilepsy

Normunds Suna, Evija Gutmane, Madara Lazdane, Guntis Karelis, Valdis Folkmanis

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People with epilepsy have increased mortality rates, which is partially attributed to sudden unexpected death in epilepsy syndrome (SUDEP). Poor seizure control appears to be the strongest SUDEP risk factor. Management of epilepsy and adherence to therapy is critical to seizure control. The belief by caregivers of negative influence caused by being informed about the syndrome is the main reason SUDEP is not disclosed. There are no clear recommendations when to disclose the risk of SUDEP and how much information should be provided. We addressed the preferences of Latvian epilepsy patients for discussing SUDEP as well as awareness of the syndrome. Our study involved 55 epilepsy patients. We found that, as in other studies, our patients were relatively well informed about SUDEP. We found that a considerable proportion of patients preferred to receive information about SUDEP from a general practitioner. We note the belief of patients that the disclosure of SUDEP would either improve or have no effect on the quality of life. We were able to identify groups of patients with a self-reported belief of more frequent expected anxiety and poor adherence to medical treatment. Our data improves the understanding of preferences of patient for discussing the negative aspects of epilepsy.

Original languageEnglish
Pages (from-to)280-285
Number of pages6
JournalProceedings of the Latvian Academy of Sciences, Section B: Natural, Exact, and Applied Sciences
Issue number4
Publication statusPublished - Aug 2017


  • Awareness
  • Epilepsy

Field of Science*

  • 3.2 Clinical medicine
  • 3.3 Health sciences

Publication Type*

  • 1.1. Scientific article indexed in Web of Science and/or Scopus database


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