Mortality rates for children and young people in the UK remain higher than many western European countries. A large proportion of these childhood deaths in the UK are in children with known chronic conditions, with chronic neurological conditions, including epilepsy, being the most common. A recent UK study of adults with epilepsy showed a higher rate of unnatural deaths such as suicide and poisoning compared to the general population. However, the mortality rate and causes of death in children (aged less than 19 years) with epilepsy is uncertain. Such information is needed to help guide policy and resource allocation for children with epilepsy to reduce the risk of premature death. We propose to fill that knowledge gap with a data linkage study using data from general practice (GP) medical records, in-patient hospital admissions and mortality records (electronic health records, EHR) from England and Wales. All children born between 1998 and 2018 and registered with a GP in the Clinical Practice Research Datalink (CPRD) will be followed up through EHR to find out, if they have had a diagnosis of epilepsy; if they have died during follow-up to a maximum age of 20 years; and if so, what was the underlying cause for their death. The death rate in children with epilepsy and those without epilepsy will be determined and compared; we will take other characteristics that may affect the risk of death, such as socioeconomic status, into account when analysing study results.
Mortality rate and causes of death in children (aged less than 19 years) with epilepsy (CWE) in the UK is uncertain. Such information can help guide policy and resource allocation for CWE to reduce their risk of premature death.
We propose to carry out a prospective, cohort study using the latest electronic primary care data set linked to hospitalization, mortality, and deprivations records available through the Clinical Practice Research Datalink (CPRD). We will determine an epilepsy (exposed) and comparison group (unexposed) from a subset of general practitioner practices whose anonymized patient-level data are linked to the Office for National Statistics (ONS) mortality records, Index of Multiple Deprivation 2010, and Hospital Episode Statistics (HES). These sources will provide information on date and cause of death (ONS), quintiles of deprivation based on patient postcodes (Index of Multiple Deprivation 2010), and inpatient hospitalizations (HES).
All children born between January 1, 1998 and January 14, 2018 will be included to ensure a follow-up period of at least one year. We will follow-up children up to a maximum of age 20 years. We will define epilepsy index date as the latest date at which someone received both an epilepsy diagnostic code and an associated AED prescription based on read diagnosis codes and prescription codes used in a previous validation study.
Cause of death will be that provided from ONS data, and subclassified into epilepsy-related death, natural non-epilepsy related, unnatural death and unknown. Risk of mortality (primary outcome) will be analysed using parametric and non-parametric survival analysis, adjusting for effects of sex, year of birth and deprivation. We will calculate mortality rate by dividing the number of events by the sum of person-years at risk. We will estimate standardised mortality ratio by comparing the mortality rate of CWE compared to controls.
The main outcome is all-cause mortality hazard in CWE, up to a maximum age of death of 20 years. Cause of death will be subclassified into epilepsy-related, natural not epilepsy-related, unnatural not epilepsy related, and unknown.
Richard Chin - Chief Investigator - University of Edinburgh
Richard Chin - Corresponding Applicant - University of Edinburgh
Christian Schnier - Collaborator - University of Edinburgh
HES Admitted Patient Care;ONS Death Registration Data;Patient Level Index of Multiple Deprivation