Quality of paediatric epilepsy care and epilepsy-related deaths

This research was undertaken by researchers at Imperial College London, Univeristy College London, and the Nuffield Trust using administrative data made available via the Office for National Statistics (ONS) Secure Research Service (SRS), which is being expanded and improved with ADR UK funding.

The UK currently has higher rates of epilepsy-related deaths in young people than other countries do, with roughly one out of every 100 people diagnosed with epilepsy. This research was led by Dr Dougal Hargreaves, and combines mortality data from the Office for National Statistics, Hospital Episode Statistics, and the Epilepsy 12 national audit for paediatric epilepsy services to study links between care quality and outcomes of children and young people with epilepsy. These three national datasets were used to investigate the association between unit performance when involving epilepsy specialists and the proportion of adolescents with epilepsy treated in each unit who died. 

This research finds that 7.5% of adolescents with epilepsy who are admitted to hospital die within the study period (averaging 4.5 years, ranging from 3-6 years old). Adolescents who are managed within paediatric units that meet national guidelines on involving paediatric neurologists are less than half as likely to die in the period following transition to adult services compared to patients who are managed in other units. 

Further findings indicate units where involvement of an Epilepsy Specialist Nurse (ESN) deteriorate over time experience a significant increase in standardised epilepsy admissions over the same period. In adjusted regression analysis, fully meeting guidelines for involving paediatric neurologists is associated with 4.6 fewer deaths per hundred patients.

This research could save lives. There are three core ways in which this research informs policy/planning decisions and discussions:

1. National policy on services for young people with long-term conditions - used in discussions at the NHS England transformation board for children and young people.
2. Work force planning - findings provide the first empirical basis for estimating the number of posts needed to ensure good outcomes.
3. Local and regional planning decisions about paediatric epilepsy services - findings reinforce the clinical and business case for strengthening links between secondary and tertiary care.

This research was runner up for the ONS Excellence Awards 2019.