A Closer Look at Digital Sleep Support for Families Managing Epilepsy

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An online sleep program helped children with epilepsy fall asleep faster and improved parent knowledge, but it was not cost-effective compared with standard care, according to research published in Scientific Reports.

Sleep issues can take a major toll not only on children’s health and behavior but also on parents’ well-being. Poor sleep can worsen daytime attention, mood and seizure management, while parents often experience exhaustion, stress and burnout. Because access to sleep specialists is limited, investigators are exploring whether online programs could offer families practical, affordable support at home.

“Sleep problems affect more than 80% of children with neurodevelopmental disorders, including epilepsy,” said senior investigator Deb Pal, Ph.D., professor of paediatric epilepsy at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London. “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.”

In this U.K.-based clinical trial, a team of investigators tested an online sleep program called COSI for parents of children aged 4 to 12 with epilepsy and sleep problems. Families were recruited from 26 outpatient clinics and randomly assigned to receive either standard care alone or standard care plus access to the COSI program. The main goal was to see whether the online program improved children’s sleep habits after three months and whether it was cost-effective after six months.

Overall, children whose families received standard care alone showed slightly better improvements in sleep habits compared with those who also received access to the online program. However, children in the COSI group did fall asleep about 16 minutes faster on average, based on objective sleep tracking, and parents gained more knowledge about sleep and sleep-support strategies. This suggests that some elements of the program, particularly its behavior-change techniques, may be helpful, even if the overall sleep scores did not improve more than standard care.

Notably, only about half (53%) of parents with web-app access engaged with the content. However, the data were analyzed for the entire group, not just those who used the resource.

“Parents who did engage with the program reported increased knowledge about child sleep and overwhelmingly said they would recommend the tool to others,” said Pal.

Cost was a major issue. Adding the online program increased costs by more than 1,200 pounds (about $1,605) per family, without a meaningful improvement in quality-adjusted life years, a standard measure of health benefit. As a result, the program was very unlikely to be considered cost-effective under current health care thresholds.

After analyzing the findings with a group of experts and patients, investigators believe parents may need increased support to help them benefit more from the app’s resources.

“Even in the digital world, you still need to hold someone’s hand. You need human interaction,” noted 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?’”

Taken together, the study suggests that while online sleep programs may help parents learn more about managing sleep and slightly improve how quickly children fall asleep, they are not yet a cost-effective replacement or add-on to standard care. Future versions that are easier to use, more engaging or better tailored to families’ needs could improve both uptake and value.