Top children’s nurses join study on epilepsy treatment

Four-year study aims to compare the effectiveness of two drugs for rolandic epilepsy – the most common form of the condition

Four-year study aims to compare the effectiveness of two drugs for rolandic epilepsy – the most common form of the condition

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A clinical trial involving two leading children’s nurses is aiming to find the best treatment approaches for epilepsy, comparing the use of anti-epilepsy drugs with not giving medication, but actively monitoring.

Bernie Carter and Lucy Bray, professors at Edge Hill University in Lancashire, will interview children with epilepsy and their parents, and look at wider issues that are important to them such as learning, sleep, mood and self-esteem.

The parents and children will be interviewed two to four weeks from the trial’s start date, at six months and then at 12 months. It is hoped that 300 children with rolandic epilepsy – the most common form of the condition, thought to affect about 10,000 people in the UK – will be enrolled onto the study, which is due to finish in 2023.

Thinking and learning

The trial, called Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE), will start later this year. It aims to compare the effectiveness of the drug traditionally used to treat the condition, carbamazepine – which while an effective anti-epilepsy medication can slow down a child’s thinking and learning – compared with a new drug called levetiracetam.

Questions will be based on a previous study carried out by the team, in which they asked children and their parents what the new study’s outcomes should be measured against.

Professor Bray said the previous study ‘has really helped the team work out what outcomes should be measured for the trial, such as seizure frequency, and what scales should be used to measure quality of life and children's learning’.

Understanding and engaging

Lead for the study’s qualitative research Professor Carter said: ‘The main focus has been on managing seizures regardless of any other side effects or impacts that the epilepsy may or may not have.

‘What we want to do is understand what parents’ experiences are of living with a child who has been diagnosed with rolandic epilepsy, and we are going to engage with the children using arts-based approaches.’

The national trial so far has 28 trusts agreeing to be involved and is being led by King’s College London and the Evelina London Children’s Hospital.

For more information on the study click here

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