Till startsida
University of Gothenburg
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Neurobehavioural problems and school-based difficulties in school-aged children with 'active' epilepsy

For this edition of the “Researcher’s Corner” we met up with Colin Reilly for a talk about a recently completed study of children with epilepsy. The study is called the Children with Epilepsy in Sussex Schools study or CHESS. It focuses on the prevalence and spectrum of cognitive and behavioural in children with ‘active’ epilepsy. The study has also assessed academic difficulties in the children and examined the utility of a behaviour screening measure in this group of children.



Could you tell us about the background to the study and could you tell us something about the aims and research questions?

- The project we have just completed is taking place in the county of West Sussex in the south of the UK. The area is largely urban with two large towns. It’s a population-based study of school-aged (5-15 years) children with ‘active’ epilepsy. Our research focus is on the learning and behavioural problems experienced by children with ‘active’ epilepsy - that is children who are currently on anti-epileptic medication, and who have had a seizure in the last year. While we knew that children with epilepsy are at high risk for cognitive and behavioural difficulties compared with typically developing peers, less was known about the exact prevalence and nature of these difficulties. What we did was to comprehensively assess these children so that we could characterise the prevalence and spectrum of the neurobehavioural difficulties in this group of children.

Can you tell us something about the design of the study, the sample involved and how you collected your data?

- We identified 115 children who had ‘active’ epilepsy in the area and 85 of them agreed to undergo comprehensive psychological assessment. I visited the children, parents and teachers in schools and undertook assessment with the children that included measures of IQ, memory, processing speed, and academic achievement. We asked the child’s parents and the teacher to complete screening forms for behavioural difficulties. In terms of behaviour the areas we looked at were ASD, ADHD, developmental coordination disorder (DCD), depression and anxiety. Neurobehavioural diagnoses were made by consensus clinical diagnosis (based on DSM-IV criteria) by paediatrician (Patricia Atkinson), paediatric neurologist (Professor Brian Neville) and child and adolescent psychiatrist (Professor Christopher Gillberg).

Can you share with us some of your most important findings and their implications?

- What we found was a very high level of difficulties in cognition, behaviour and or/academic achievement. Over 90% of children had difficulties in at least one of the assessed areas. We also found that in terms of behavioural diagnosis only one third had previously been diagnosed. Hence a lot of the problems are going unrecognised and this is a major issue for the children because they are not getting the support or the services that would optimise their care and their educational progress. In terms of the types of difficulties the children had, the most common difficulty was symptoms of attention deficit hyperactivity disorder (ADHD), followed by autism spectrum disorder (ASD) and developmental coordination disorder (DCD). In terms of developmental coordination disorder (difficulties with things like handwriting, processing speed, learning new motor skills, swimming, riding a bike etc.) there have been no previous population-based studies of this condition in childhood epilepsy so it was interesting to find that approximately one in five children had this diagnosis. This was somewhat surprising to us. By adopting a comprehensive approach we were also able to identify that comorbidity is very common. Many children have multiple problems. This highlights the need to use the ESSENCE-concept with respect to these children. It is probably not useful to just go and assess for one thing. You need a broad-based behavioural screen, you need to look at global and specific aspects of cognition, ask about motor performance and performance on measures of school achievement.

Can you tell us something about the link between childhood epilepsy and neurobehavioural problems?

- There is a well-documented association between childhood epilepsy and cognitive, behavioural and emotional difficulties. While the link between epilepsy and these problems has been established for quite a period of time available evidence suggests that these difficulties are still under-recognised. In addition to increased risk for cognitive difficulties there is also increased risk for symptoms associated with ADHD, ASD, depression and anxiety. As epilepsy affects the brain you would anticipate both cognitive and neuropsychiatric difficulties. However, based on our findings we are hypothesising that there may be different contributory factors to these difficulties.

- While epilepsy related difficulties such as having first seizures before 24 months and being on more than one antiepileptic medication were related to cognitive difficulties they were not related to the behavioural diagnoses. There appears to be a general effect of epilepsy, meaning that if you have epilepsy you are at increased risk of having behavioural difficulties, but it is not so easy to predict what types of difficulties you might have.

Why is it difficult to predict the specific behavioural difficulties that might occur?

- One of the reasons is that it is not just the seizures, which are causing the difficulties; there are potentially other neurobiological factors and psychosocial issues at play. There is often an underlying aetiology or disease process, which is causing both the seizures and the other conditions. If you take a child with epilepsy it is quite possible that he or she has had behavioural difficulties before the onset of epileptic seizures. This suggests that something else is going on in the brain, which is driving both the seizures and the behavioural problems. Many parents may feel that if they can manage to get the seizures under control the behavioural difficulties will go away. But in most cases that will not happen, because it is not the seizures that are driving the behaviour, but an underlying brain process, which is driving both the seizures and the behavioural difficulties. The relationship between epilepsy and behavioural problems is bidirectional. Many of these children have difficulties before they have epilepsy. So if you have ASD or you have ADHD you are at increased risk of having seizures. With respect to psychosocial issues the family’s reactions and the child’s reaction to having this condition can impact negatively on emotional wellbeing. From a societal perspective epilepsy is still associated with stigma and this can impact child and family wellbeing.

It seems that behavioural and psychiatric disorders are under recognised in childhood epilepsy. Why is that?

- One of the key issues is the level of under identification. One likely reason is that the presence of seizures overshadows the symptoms of behavioural problems and, sometimes, specific cognitive issues. We might say a form of diagnostic overshadowing is at play. The child has seizures and therefore medical professionals may not look beyond that and fail to ask important questions about behaviour or cognition. They are focused only on managing the seizures. And this can also be the case with parents, who observe the seizures and identify them as the problem that needs to be fixed and subsequently go to the doctor and primarily talk about seizures. It is also possible that schools do not report issues of behaviour and cognition as much as they should because again they see the child as having primarily epilepsy and they attribute the child’s difficulties to that diagnosis. This is why it is so important for professionals to ask questions such as how is this child getting on in school, and to actually screen for behavioural and cognitive problems. Because if you do not ask, significant problems may be missed.

What are the main outcomes you would like to see as a result of your research?

- The key thing that I would like to come out of these studies is that these children are screened for cognitive and behavioural problems. Generally speaking children with epilepsy have lots of problems across a range of ESSENCE domains. Comorbidity is very common. All children need a broad-based behavioural screen, cognitive assessment and assessment of academic functioning. With regard to behaviour we found that using a behavioural screening instrument such as the Strengths and Difficulties Questionnaire (SDQ) is a good starting point and is useful for identifying at risk children. Once identified you can begin looking for specific problems that these children may have. We would recommend that all children with active epilepsy be screened for neurobehavioural problems. A lot of them, prior to this, haven’t been screened so that is something that we are strongly advocating.

Secondly what we would like our research to move towards is finding the best way of supporting these children with regard to interventions and understanding the neurobiological and psychosocial aspects of the neurobehavioral difficulties. We also need to look at improving awareness in schools and supporting teachers to optimise outcomes for these children. We also need to find the best way to support parents, who often have significant stress and mental health issues as a result of parenting a child with an unpredictable, often chronic condition. The strongest predictor of lowered quality of life in childhood epilepsy is often the presence of neurobehavioral problems and not seizures, so identifying and treating these problems can have a major impact on outcome for children and their families.

By Nanna Gillberg



Page Manager: Anna Spyrou|Last update: 2/21/2014

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