King's College London

Children with complex neurological needs, including epilepsy and intellectual disability, account for a high and increasing proportion of hospital costs. These patients often require overnight video-electroencephalography (EEG) telemetry (VT) to distinguish seizures from non-epileptic behaviours such as staring or stereotypies.

Previously, this test required another hospital admission for these highly medicalised children. Now, the clinical team at King’s Health Partners (including Co-I, Dr Winston) have led the transfer of this service to the home, retaining diagnostic yield (69%), while reducing costs by one third and pleasing families.

In this project, we will test whether the ability of home VT to assess naturalistic sleep can provide i) unique diagnostic information, and ii) a target for therapies.

This project is part of the 'Communities' and 'Frugal Innovation' clusters within King’s Better Health & Care Futures.

We are taking advantage of the ground-breaking King’s Electronic Records Research Initiative and GSTT Electronic Records Research Interface, to analyse deidentified 'big data' from routine health records.

We expect this project to improve care pathways for children with complex neurological needs, via a joined-up analysis of diagnostic and therapeutic interventions across home and hospital settings.

Outputs

The project is underway currently, and we have already extended its infrastructure. Dr Whitehead has secured permission from the GSTT Electronic Records Research Interface to extend our data collection there, PhD candidate Liuni Zou's scholarship to study medically complex infants - 2024 to present - will complement the research by focusing on neonatal-onset neurological risk, and we have conducted and published engagement and involvement with families about this and our wider research programme.