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Research update: SEEN study reaches new phase

Amy Muggeridge, Research Manager at Young Epilepsy, provides an update on the SEEN (Sussex Early Epilepsy and Neurobiology) study, which was officially published back in March 2018.

On Wednesday 6 June 2018, the second of five research articles from our Sussex Early Epilepsy and Neurobiology (SEEN) Study was published in the journal of Developmental Medicine and Child Neurology.

We know that childhood epilepsy is frequently associated with a developmental, learning and behavioural difficulties. In fact, very often these associated problems actually have a greater impact on someone’s life than their seizures. What we don’t really know is quite how prevalent these problems are and what causes them.

The SEEN study is one of the first population–based studies to look at these issues in young children with epilepsy, and the only one to compare the results to a group of similar children who had other neurological conditions but not epilepsy. A population-based study looks at all of the people in a set population (such as post-code, county or school) with the target characteristic; in this case, childhood epilepsy. In the SEEN study we saw 91% of the eligible children in our target population – the county of Sussex.

We looked into the prevalence of developmental difficulties and found that nearly three quarters (71%) of the children with epilepsy in the study had Global Development Delay (GDD). GDD is diagnosed when a child has significant delay in reaching both intellectual and physical milestones as they grow up. We also found that over half (56%) of the children with epilepsy showed significant deficits in Adaptive Behaviour. Adaptive Behaviour refers to the everyday skills needed by a person in their environment to get along successfully – very similar to the term ‘life skills’. These numbers are well above the national averages for GDD and Adaptive Behaviour problems and present enormous challenges in school.  

Having found such high frequencies of these problems, we next searched for patterns which may indicate why these problems arise. The results indicated that there may be a link between these problems and polytherapy and also if you have non-white ethnicity. Polytherapy is the use of more than one medicine to manage a condition. This is quite common in epilepsy as it is a hugely complex condition. The association with GDD and reduced Adaptive Behaviour could be due to side effects of medicines or to the underlying epilepsy being so complex in itself as to require polytherapy. Being of non-white ethnicity has been associated in the past with a higher risk of developing epilepsy in childhood and so this may help explain why we found a higher level of GDD and adaptive behaviour problems in our participants from non-white ethnicities. It is very important to note however, that we cannot say that these are causal links. These are simply emerging patterns that highlight the need for specific research in this area.   

When we compared the results from the children with epilepsy to those with other neurological conditions, we found that neurodevelopment itself seems to be different in children with epilepsy. Neurodevelopment is the creation of pathways in the brain, essentially whenever you learn something, anything, you are improving your neurodevelopment. What our findings show is that the way this happens in the brains of children with epilepsy may be different for the way that children with other neurological disorders or normally developing brains do. Again, we need to campaign for more research in this area to see if this is really the case, but if so, then it will have serious impact on how we understand and treat childhood epilepsy.

These results contribute significantly to the evidence that epilepsy is so much more than seizures and highlight the very sobering array of challenges faced by children with epilepsy. This paper is one of five due to be published from the SEEN study over 2018. These papers will focus further on neurodevelopment as well as problems with sleep, and the impact that having a child with epilepsy can have on parental mental health. Watch this space!

Read the report in full here

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Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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