Web-app helps children with epilepsy to fall asleep earlier

An evidence-based web-app helped children with epilepsy to fall asleep on average 16.5 minutes earlier. 

A new UK-wide clinical trial led by the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King's College London has evaluated a self-guided behavioral sleep programme for the parents of children with epilepsy. 

The programme, which is funded by the National Institute for Health and Care Research, is called COSI (CASTLE Online Sleep Intervention) and consists of online videos and written guides based on clinically informed sleep intervention behavioural techniques. 

"Sleep problems affect more than 80% of children with neurodevelopmental disorders including epilepsy," said Professor Deb Pal, Professor of Paediatric Epilepsy at King's IoPPN, the senior author on the study. "Children with epilepsy present a unique set of challenges when managing their sleep and addressing sleep problems including the small risk of death during a seizure. Sleep problems in children with epilepsy are one of the top concerns for both children and parents but are often unaddressed in health care interactions." 

The trial was conducted across 26 different out-patient clinics across the UK and involved 85 children aged 4-12 years old with epilepsy and their parents. Efficacy of the intervention was assessed based primarily on parental questionnaires. Sleep data were also collected from the children using smart watches that measured sleep duration from their body movements. 

The data from the watches showed that on average the children with the web-app based intervention slept 16.5 minutes earlier than at the beginning of the trial. 

However, the main outcome of the trial was assessed using parental questionnaires that did not show a significant perceived improvement in sleep in the group of children receiving the intervention compared to those receiving standard care. 

"The main issue was engagement. half of the people who were given access to the resources used them," commented Professor Deb Pal. 

The trial showed that 53% of those given access to the web-app engaged with the content. However, the data were analysed for the whole group, including those who did not use the resource heavily. "Parents who did engage with the programme reported increased knowledge about child sleep and overwhelmingly said they would recommend the tool to others," commented Professor Pal. 

After the trial concluded, a Policy Lab involving paediatricians, people with lived experience, representatives from the Epilepsy Specialist Nurses Association, British Psychological Society, NHS England, Maudsley Learning Centre, and a CBT-I specialist was called to evaluate the results and to discuss future refinements to the digital approach. The conclusions supported increased support for parents using the app to help them benefit more from the resources.

"Even in the digital world you still need to hold someone's hand. You need human interaction," commented Professor Pal. 

"Some people are very happy to read things off a screen. Some people need to be prompted a bit more and encouraged to explore it. Ideally, they would come back in a couple of weeks and be asked, 'well how did you get on?'"

The study was the result of a collaboration between researchers at King's College London, University of Liverpool, Edge Hill University, Oxford Brookes University, Bangor University and University of Exeter. 

This research was funded by the National Institute for Health and Care Research (NIHR) Programme Grant for Applied Research RP-PG-0615-20007. Professor Deb Pal was additionally supported by the NIHR Maudsley Biomedical Research Centre.