Epilepsy: key data sources

National Records of Scotland (formerly GROS)

Data on deaths come from the system for certification administered by the National Records of Scotland (formerly the General Register Office for Scotland).

Practice Team Information 

Until 2012/13, the Practice Team Information (PTI) programme provided information on GP consultations for epilepsy in Scotland. This information can be used to estimate the national prevalence of epilepsy using information collected from a representative sample of GP practices. However, the PTI system was discontinued in September 2013 and will be replaced by the Scottish Primary Care Information Resource (SPIRE). Historical information on epilepsy consultations and prevalence estimates up to 2012/13 are available from the PTI pages of the ISD website. 

Scottish Primary Care Information Resource

The Scottish Primary Care Information Resource (SPIRE)  is a new national GP information system currently in development – it supersedes and builds on the data collected for PTI. SPIRE aims to include richer data from a greater number of practices and will help to inform public health surveillance, research and data linkage. Further benefits will see the creation of a mechanism to feedback data analysis to practices and an improved data extraction process.

QOF (nGMS) data

The Quality and Outcomes Framework for the new GMS (General Medical Services) contract provides an estimate of the number of people with epilepsy  who are aged 18 or over and known to each practice. Further information can be found under in the "prevalence data" sections of ISD's Quality and Outcomes Framework (QOF) pages. From 2014/15, epilepsy indicators no longer appear on QOF.

Hospital discharge data

Statistics on hospital admissions for epilepsy are held in the Scottish Morbidity Record (SMR) databases. These data reflect serious complications of epilepsy but do not provide a true reflection of the prevalence of epilepsy, as only a minority of people with epilepsy need to be admitted to hospital.

Prescribing data

Each prescription issued is recorded, and these data are collected and analysed by ISD as part of the data provided by the Prescribing Team (click on 'community dispensing' in the left hand menu - data on epilepsy drugs are presented in the section on prescribing cost analysis information). A limitation with regard to drawing conclusions about a epilepsy is that the drugs used in epilepsy can be used for other conditions as well. Recent prescription data include patient identifiers that allow characteristics of patients to be linked to prescriptions.

Sudden unexplained death in epilepsy

Routine mortality data in Scotland do not provide information on sudden unexplained death in epilepsy (SUDEP). Some epidemiological information is available from a national clinical audit of epilepsy related deaths  published in 2002. In 2013, SUDEP Action set up an epilepsy deaths register to record cases of SUDEP. A summary of the latest findings was produced in 2014.

Other sources of data

Surveys provide useful information about the likely prevalence of epilepsy in Scotland. The review by Forsgren (2005) provides data on prevalence in European countries.

Please note: If you require the most up-to-date data available, please check the data sources directly as new data may have been published since these data pages were last updated. Although we endeavour to ensure that the data pages are kept up-to-date, there may be a time lag between new data being published and the relevant ScotPHO web pages being updated.