Epidemiology and Natural History of Sleep Disordered Breathing and Respiratory Support in Children and Young People With Cerebral Palsy

What this Trial Is About

Cerebral palsy (CP) is a lifelong movement disorder caused by brain damage around birth, and children with CP are more likely to have sleep disordered breathing (SDB). SDB symptoms include noisy breathing during sleep, daytime sleepiness, and low energy, which may affect brain function, learning, and heart health. This study aims to understand how common SDB and respiratory support use are among children with CP across the UK, as well as explore social factors influencing access to sleep care and challenges in starting respiratory support. The research will be conducted as a nationwide UK Sleep Surveillance Survey in two parts: a point prevalence survey and an incidence self-reporting form over one year. The point prevalence survey will collect information from pediatric centers on the number of children with CP already using respiratory support and local practices for managing suspected SDB. The incidence survey will track new cases of SDB diagnosis and respiratory support initiation monthly, including detailed data on social factors such as ethnicity and living environment. Participants include children aged up to 16 years with confirmed CP diagnosis, either currently on respiratory support or newly diagnosed with SDB and started on respiratory support. Data collection involves questionnaires completed by designated contacts at pediatric sleep centers. Researchers will measure the prevalence and incidence of respiratory support use, study types of sleep tests and respiratory supports used, and assess social and geographic factors over a 13-month period. This observational study will help identify barriers and facilitators to respiratory support initiation for children with CP.

Epidemiology of Sleep Disordered Breathing in Children and Young People With Cerebral Palsy