SUDEP Action

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Cardiff study assesses provision of SUDEP information to parents of children with epilepsy


Researchers in Cardiff have carried out a service evaluation to identify whether parents of children with epilepsy are informed about SUDEP by healthcare professionals.
The study carried out at 3 hospitals in South East Wales found that although 52% of those involved in the study were aware of SUDEP only 16% had been informed by a healthcare professional.  It also found that 70% found information about the risk via alternative sources. 

The study concluded that all parents of children with epilepsy should receive tailored information about SUDEP as this could help minimise risk factors and help reassure the parents if necessary.  It also concluded that providing parents with tailored information could prevent the use of less reliable information sources. 

“SUDEP Action who currently campaign for openness endorse the findings of this study, and would urge anyone who is concerned about their child’s condition to discuss it with the health professionals involved in their care.”  Jane Hanna, SUDEP Action Chief Executive Officer.

The SUDEP Action Call for Openness campaign promotes a common sense approach of informing people at risk of ways they can reduce their risk of SUDEP.  One way is to minimise the risk of seizures with good patient education and medical management. Disclosure can help patients understand the importance of accurately reporting their seizures, taking their medication as prescribed and making lifestyle choices with seizure trigger minimisation in mind.  Openness can also help reassure people who may have heard about SUDEP that in fact they have a very positive prognosis.

Sources and links for more details of the study: 

Journal of Neurology, Neurosurgery & Psychiatry

Welsh Paediatric Society