Rear view of father and daughter using laptop at home
A groundbreaking UK-wide clinical trial led by the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) and the Faculty of Life Sciences and Medicine at King’s College London has assessed a self-guided behavioural sleep programme designed for parents of children with epilepsy. The trial, which is funded by the National Institute for Health and Care Research, introduces COSI (CASTLE Online Sleep Intervention), a program comprising online videos and written guides rooted in clinically informed sleep intervention techniques.
Professor Deb Pal, Professor of Paediatric Epilepsy at King’s IoPPN and senior author of the study, highlighted the significance of addressing sleep issues in children with epilepsy.
“Sleep problems affect more than 80% of children with neurodevelopmental disorders including epilepsy. 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,”
he explained.
Trial Implementation and Methodology
The trial was conducted across 26 outpatient clinics throughout the UK, involving 85 children aged 4-12 years with epilepsy and their parents. The efficacy of the intervention was primarily evaluated through parental questionnaires, complemented by sleep data collected from the children using smart watches that measured sleep duration based on body movements.
First author Professor Paul Gringras, Clinical Lead of Sleep Medicine at the Department of Women & Children’s Health, emphasized the collaborative nature of the intervention’s development.
“Our focus throughout was on the careful co-creation, with families, of a digital intervention that drew on the very best existing evidence-based sleep interventions,”
he commented.
Key Findings and Challenges
The data from the smart watches revealed that children using the web-app based intervention fell asleep on average 16.5 minutes earlier than at the trial’s onset. Despite this, the primary outcome measured through parental questionnaires did not indicate a significant perceived improvement in sleep compared to those receiving standard care.
Professor Deb Pal noted a critical issue with engagement, stating,
“The main issue was engagement. Half of the people who were given access to the resources used them.”
Professor Gringras further elaborated on the engagement challenge,
“These are families with multiple challenges, who are very busy and sleep is not the only problem they face.”
The trial showed that 53% of participants engaged with the web-app content. However, the analysis included all participants, regardless of their level of engagement. Professor Pal remarked,
“Parents who did engage with the programme reported increased knowledge about child sleep and overwhelmingly said they would recommend the tool to others.”
Future Directions and Policy Implications
Following the trial, a Policy Lab was convened, involving paediatricians, individuals with lived experience, representatives from the Epilepsy Specialist Nurses Association, British Psychological Society, NHS England, Maudsley Learning Centre, and a CBT-I specialist. The group evaluated the results and discussed potential refinements to the digital approach, ultimately supporting enhanced support for parents using the app to maximize the benefits of the resources.
This development follows a growing recognition of the need for tailored interventions in managing epilepsy-related challenges. The move represents an important step towards integrating digital solutions into healthcare, particularly for conditions requiring multifaceted management strategies.
As the healthcare community continues to explore digital interventions, the insights from this trial could inform future programs aimed at improving the quality of life for children with epilepsy and their families. The next steps involve refining the engagement strategies and exploring additional support mechanisms to enhance the efficacy of such digital tools.
