<abstract xmlns="http://www.w3.org/1999/xhtml"><p>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.</p></abstract>

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.

Preferences of Patients for Discussing Sudden Unexpected Death in Epilepsy

Riga East Clinical University Hospital “Gaiļezers”

Proceedings of the Latvian Academy of Sciences. Section B. Natural, Exact, and Applied Sciences.

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

{"article-title":"Preferences of Patients for Discussing Sudden Unexpected Death in Epilepsy"}

People with epilepsy have increased mortality rates, which is partially attributed to sudden unexpected death in epilepsy syndrome (SUDEP). Poor seizure...

Preferences of Patients for Discussing Sudden Unexpected Death in Epilepsy

Publié en ligne: 09 sept. 2017

Pages: 280 - 285

Reçu: 02 mars 2017

Accepté: 11 mars 2017

DOI: https://doi.org/10.1515/prolas-2017-0047

Mots clés
epilepsy, SUDEP, awareness

© 2017 Normunds Sūna et al., published by De Gruyter Open

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

Preferences of Patients for Discussing Sudden Unexpected Death in Epilepsy

Publié en ligne: 09 sept. 2017

Pages: 280 - 285

Reçu: 02 mars 2017

Accepté: 11 mars 2017

DOI: https://doi.org/10.1515/prolas-2017-0047

Mots clésepilepsy, SUDEP, awareness

© 2017 Normunds Sūna et al., published by De Gruyter Open

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

Mots clés
epilepsy, SUDEP, awareness