Epilepsy12 Round 3 - background, methodology and data entry and reporting timeframe

Information about Round 3 of Epilepsy12, a national clinical audit of childhood epilepsies, including the background, methodology and data collection documentation tools.

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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) commissioned 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 RCPCH delivered rounds 1 and 2 of Epilepsy12 between 2009 and 2014, auditing the quality and delivery of care for children and young people (CYP) with suspected and diagnosed epilepsies within the UK. The national reports for rounds 1 and 2 were published respectively in 2012 and 2014.  
As with round 1, the full methodology for round 2 of Epilepsy12 (PDF, 583KB)was developed in conjunction with a broad range of key stakeholder professional and patient organisations. The methodology was aligned to guidance from NICE The epilepsies: the diagnosis and management of the epilepsies in children and young people in primary and secondary care (2012) and SIGN Diagnosis and management of epilepsies in children and young people (2005). 

Epilepsy12 Round 3 – Full methodology details

Round 3 of Epilepsy12 will be comprised of 3 main audit domains:

  • service descriptor domain (organisational audit)

  • clinical care domain (clinical audit)

  • patient reported experience measures (PREM) domain.

The full methodology for round 3 (PDF, 22 pages, 1.57 MB) describes each of these domains in detail, sets out the related data collection and reporting timelines and indicates how participating health boards and trusts will be incorporated into the audit and aligned with OPEN UK networks.

Round 3 Datasets

Copies of the final service descriptor and clinical audit datasets will be uploaded to these pages following piloting during February and March 2018. The round 2 PREM questionnaire (PDF, 621 KB) will be reviewed and updated in consultation with children, young people and parents via activities coordinated by the RCPCH Children and Young People's Engagement Team and the patient organisations which are represented on the Epilepsy12 project board.

Round 3 Data Collection and Reporting - Key dates

As set out in the full methodology document, data entry for the service descriptor and clinical audit domains will begin from April 2018. Service descriptor data will be captured for each paediatric service in April each year from 2018 to 2020. Clinical audit entry will be prospective with eligible patients grouped into three yearly cohorts as follows:

  • Year 1 cohort 1 – 1 April 2018 to 30 September 2018
  • Year 2 cohort 2 – 1 October 2018 to 30 September 2019
  • Year 3 cohort 3 – 1 October 2019 to 30 September 2020

As detailed above, the PREM questionnaire will be revised for round 3 and is expected to be incorporated into the audit from autumn 2019.

NHS England Quality Accounts List 2018/19

Epilepsy12 is one of the national audits within the National Clinical Audit and Patient Outcomes Programme (NCAPOP) which NHS England advises trusts to prioritise for participation and inclusion in the NHS England Quality Accounts list for 2018/19.


If you have any queries, please contact the Epilepsy12 team at: epilepsy12@rcpch.ac.uk or on 020 7092 6168/6170