Epilepsy12 Round 2 - background, methodology and datasets

Information about Round 2 of Epilepsy12, a national clinical audit of childhood epilepsies, including the background, methodology and data collection documentation tools.

Data entry for Round 2 took place throughout 2013 and 2014. The national reports for Round 2 were launched on 26 November 2014.

On this page:

Background

The British Paediatric Neurology Association (BPNA) proposed a national audit of childhood epilepsies in 2007 in response to the continuing concern regarding the quality of care for children and young people with epilepsies.

In 2009, the Healthcare Quality Improvement Partnership (HQIP) and Health Improvement Scotland (HIS) funded the Royal College of Paediatrics and Child Health (RCPCH) to establish Epilepsy12 - the UK collaborative clinical audit of healthcare for children and young people with suspected epileptic seizures.

The project Clinical Lead is Dr Colin Dunkley, Consultant Paediatrician.

Methodology

Epilepsy12 comprises three components:

  • clinical audit component - compares delivered care against recommended care using 12 key indicators derived from the NICE and SIGN guidelines
  • service descriptor component - aims to obtain contextual information about the service
  • patient experience questionnaire - aims to capture the experiences of both the young person and parent/carer through the Patient Reported Experience Measure (PREM).

Read the full Round 2 methodology document (PDF, 565KB, 33 pages) - includes:

  • clinical cohort ascertainment 
  • the 12 clinical performance indicators 
  • service descriptors ('census day' as at 1 January 2014)
  • Patient Reported Experience Measure - 'PREM live' 
  • complete Round 2 audit datasets.

NICE quality standard

In March 2013, NICE published a quality standard for the epilepsies in children and young people, with nine quality statements. Epilepsy12 currently uses 12 performance indicators mapped to the same national recommendations.

It is anticipated that in future audit rounds, Epilepsy12 methodology will evolve to support the capturing and understanding of the NICE quality statements. It will also develop other outcome measures and metrics supporting ongoing quality improvement.

Data collection tools

Patient Reported Experience Measure (PREM) guidance and documentation

Contact

If you have any queries, please contact the Epilepsy12 Team on epilepsy12@rcpch.ac.uk