Epilepsy12 FAQs
Project Background
- What are the aims of the audit?
- Which services in the UK are eligible to participate?
- What is an Audit Unit?
- What is an Audit Unit Lead?
- What is Census Day?
- What is being measured?
- What is the inclusion and exclusion criteria?
- Who will carry out the audit?
- How will the web portal work?
- Will patient identifiable information be collected?
- Where will the data be stored and how will it be secured?
- What are the 12 Performance Indicators?
- How were the performance indicators chosen?
- How is misdiagnosis being considered?
- Is the audit measuring clincial outcomes?
Data Collection
- Who will carry out the audit?
- What incentives are there to take part?
- I have registered but haven't heard anything from the Epilepsy12 team
- I haven't received the EEG list from my EEG department
- I am having trouble working through the EEG list
- How do I begin entering data?
- Why is the ascertainment sheet important?
- How do I add helpers?
- What do I do with the patient questionnaires in the pack?
- What will happen if an audit unit has difficulties completing the audit?
- I have submitted a patient but now need to amend the entry
Feedback of Results
- Will there be league tables?
- Will audit unit's results be published?
- When will the results be published?
- Where can I find out more?
Project Background
What are the aims of the audit?
- To facilitate health providers and commissioners to measure and improve quality of care for children and young people with seizures and epilepsies.
- To contribute to the continuing improvement of outcomes for those children, young people and their families.
The audit will examine care across the whole UK including England, Northern Ireland, Scotland and Wales. All paediatric services that employ NHS paediatricians that request EEGs and are involved with the care of children and young people with seizures or epilepsy are invited to participate.
The audit will be conducted principally around hospital and community services functioning at a secondary tier level. For hospitals with tertiary roles it will be any secondary care aspects within their service that will be the main focus of the audit.
The UK is divided into defined 'audit units' which in the majority of cases are based on existing clinical networks, affiliations and pathways of care. Each audit unit will have a defined 'link Paediatrician' and component paediatric services.
Most audit units will comprise groupings of both hospital and community paediatric services. Each audit unit is linked with one or more tertiary paediatric services with whom it has developed pathways of care.
Each tertiary service has a defined lead or 'link paediatric neurologist.'
Audit Unit Leads are normally consultant paediatricians or associate specialists. These leads will act as the main point of contact for the project, coordinate data entry at a local level and work with colleagues to act on results when published.
This is the key point in time defined by the project team which determines when an audit unit can become 'live' via the web portal and begin to enter data. It is the date which is considered by the audit unit team when describing attributes of the audit unit's services. It also determines the various dates which identify the target cohort for the audit.
All children and young people included in the audit will have presented to paediatric service at least 12 months prior to census day. The census day for 'early adopter' regions will be 1 February 2011. The census day for the rest of the UK will be 1 May 2011. Epilepsy12 Timelines (PDF, 88KB, 2 pages).
The audit will allow the audit unit to measure quality of care into three seperate domains(PDF, 145KB, 1 page).
Service Descriptors
Each audit unit lead will complete a service descriptor questionnaire via the web portal to describe the epilepsy service within their audit unit as it was on census day.
Clinical Audit and Performance Indicators
The web portal will prompt the clinical audit process which may be undertaken by a number of professionals from within the audit unit.
- The audit unit will generate a letter to the relevant EEG department asking for their help in identifying all children and young people referred from their services for an EEG within the defined 12-month time period.
- The audit unit will filter these patients by application of inclusion and exclusion criteria to establish the target cohort.
- Case notes for the target cohort will be analysed by the audit unit and relevant questions answered for each patient.
User Experience
Audit units will be supported such that an anonymous user experience survey is undertaken:
- A cohort will be identified for each audit unit. This will be all children and young people commenced on regular anti epilepsy drugs and not deceased.
- A paper questionnaire and cover letter will be sent to each family by the audit unit team.
- Anonymous questionnaires will be returned in pre-paid envelopes to the RCPCH project team or questionnaire answered online.
What is the inclusion and exclusion criteria?
The criteria is summarised in the audit methodology page and is also available for download: Epilepsy12 Inclusion & Exclusion Criteria(PDF, 5.5KB, 1 page)
Data Collection
The audit will be led at local level by the audit unit 'link Paediatrician'. For those taking part it should feel like a typical departmental audit except that the audit is supported by a web portal and central RCPCH team. The audit is constructed such that the audit unit lead can choose to nominate other professionals to take part. For example, the audit department may help with ascertainment, junior doctors may help with case note review and a departmental secretary may help with the user experience questionnaire.
It is likely that different units will achieve the audit in different ways depending on local arrangements. The audit will be supported centrally by the RCPCH Epilepsy12 project team throughout the three year project.
The website has been designed specifically to support the Epilepsy12 audit project. Defined health professionals within each audit unit will be given individual access rights to their audit unit within the website. The website will support many aspects of the audit and the majority of data collection will be done through online forms. Help will be available to support this process.
Will patient identifiable information be collected?
The audit has exemption from section 251 of the NHS Act 2006 (formally section 60) which has been granted by the National Information Governance Board (formerly PIAG). Users will be asked to submit the child's NHS number and date of birth into the web portal. These will be encrypted upon entry.
Where will the data be stored and how will it be secured?
Data will be stored and held securely in compliance with Data Protection and Caldicott Guardian principles. Only users registered with the audit will be able to enter data and will only be able to so through the use of a unique username and password. Further data security policies are available from the project team.
What are the 12 performance indicators?
This is the term given to defined quality parameters determined from the clinical questionnaire. Each performance indicator (PI) correlates with specific SIGN and NICE recommendations and has a defined method of calculation. We are encouraging services to examine their own scores alongside other providers scores. It may not be optimal for a service to score 100% as patients and circumstances differ and not all children fit with all models of care. Target standards will not be set in this audit cycle.
The 12 performance indicators are available in the audit methodology page and is also available for download: Epilepsy12 Performance Indicators(PDF, 5.6KB, 1 page)
How were the performance indicators chosen?
The Epilepsy12 team selected meaningful measures that can be mapped to NICE and SIGN with a clear rationale. These act as broad indicators of good practice and can be reasonably defined and achieved by the methodology of retrospective case note analysis.
How is misdiagnosis being considered?
The Epilepsy12 team has considered how to obtain a measure of misdiagnosis using a retrospective case note methodology. The chosen approach is different from actual misdiagnosis rates. To measure misdiagnosis in a gold standard way would need independent clinical review for each child. This is impractical and not appropriate for what is intended. The Epilepsy12 national audit will explore 'whether there was any documented evidence of withdrawal of diagnosis of epilepsy by 12 months after first paediatric assessment'.
Is the audit measuring clinical outcomes?
Epilepsy outcomes are difficult to measure objectively within the current health service structures and methodology of the Epilepsy12 audit. Meaningful outcome measurements are particularly difficult in epilepsies as they are a heterogenous group of long term conditions with a wide and varied impact beyond just their seizure component. Clinical outcomes based on 'syndrome-specific seizure freedom rates' are being piloted within the clinical domain of this audit.
The audit will be led at local level by the audit unit lead. For those taking part it should feel like a typical departmental audit except that the audit is supported by a web portal and central RCPCH team. The audit is constructed such that the audit unit lead can choose to nominate other professionals to take part. For example, the audit department may help with ascertainment, junior doctors may help with case note review and a departmental secretary may help with the user experience questionnaire.
It is likely that different units will achieve the audit in different ways depending on local arrangements. The audit will be supported centrally by the RCPCH Epilepsy12 project team throughout the three-year project.
What incentives are there to take part?
Everyone who takes part in the audit and is involved in entering data will receive a certificate from RCPCH evidencing their input. Trusts can refer to participation within this audit as evidence within their 'Quality Accounts'. Individual consultants can cite participation within this audit towards evidence of ongoing competencies towards managing children with epilepsies. Participation rates for all UK paediatric services will be published into the public domain.
I have registered but haven't heard anything from the Epilepsy12 team
Audit packs (explaining how to get started) and log in details will be sent to registered units once we have your Trust's Caldicott Guardian Approval.
I haven't received the EEG list from my EEG department
If it has been more than three weeks, we suggest you contact your EEG department to check that they have received the request and to find out whether there are any specific issues they need support with. This may be something you can resolve between yourselves or something the project team can help with.
I am having trouble working through the EEG list
This is a challenging but necessary part of the ascertainment process. Different units will need to approacl this in different ways and there are a few suggestions we can work through depending on the local issues. Please contact the Epilepsy12 project team for advice.
Once you have registered and Caldicott Guardian approval has been obtained, we will send the audit lead an audit pack which explains how to get started as well as log in details for the web tool.
The web tool address is https://epilepsy12.rcpch.ac.uk/. Once you have entered your log in details, you'll have access to all the questionnaires.
Why is the ascertainment sheet important?
It is vital that you do not lose or throw away this document or the EEG list. The website anonymises patients so this record keeps the only details of the UIN for each patient. You will need this information at a later stage to:
- know who to send patient questionnaires to
- answer the two questions at the end of the clinical audit which asks for the total number of children on the EEG list and total number of children excluded. This information sheet is needed in order for us to determine data completeness and ascertainment completeness.
You are able to add helpers directly from the web tool by going to the User details tab on the menu. Please see the web user guide for guidance. Alternatively contact the Epilepsy12 project team who will set up Helpers for you.
What do I do with the patient questionnaires in the pack?
When you have submitted all eligible patients into the web tool, please click 'close and lock' on the clinical audit page. This will open the final tab - 'the patient experience section'. You will see a list of UIN's for all patients eligible to receive the patient questionnaire (presumed alive and received anti-epileptics). Follow the instructions on the screen to print off cover letters. Insert these in the packs and post them.
What will happen if an audit unit has difficulties completing the audit?
It is hoped that all paediatric services within the UK will participate in the audit. The project team will provide support to audit units in order to help them undertake the three domains. It is acknowledged that not all audit units may achieve participation and complelte all three audit domains. Degree of participation and data completeness will be reported for all participating and non-participating audit units.
I have submitted a patient but now need to amend the entry
Please contact the Epilepsy12 team who can un-submit the record for you which will allow you to amend any details, save and then re-submit.
Feedback of Results
Will there be 'league tables'?
'League tables' will be considered as an inappropriate and non-meaningful approach to displaying results.
Will audit unit's results be published?
In the long term all audit unit's data will be available within the public domain.
When will the results be published?
Each unit will receive a summary of their own results in February/March 2012 to check for accuracy. The draft report summarising results by unit and region and aggregated across all units will be sent to you in June 2012 so you can start action planning. The final report will be published and released into the public domain in September 2012.
Contact the Epilepsy12 project manager, Rita Ranmal, at epilepsy12@rcpch.ac.uk or telephone 020 7092 6167
Associated Publications, Resources and Links
- Epilepsy12 - background and purpose
Epilepsies are the commonest disabling chronic neurological disorders of childhood with a prevalence of approximately ... - Epilepsy12 National Audit
About the National Epilepsy12 Audit This national 3 year audit, funded by the Health Quality Improvement ... - Clinical Audit and Quality Improvement
Clinical audit projects As part of the College's strategy for clinical audit , we facilitate high ... - Mapping services
We are currently mapping the UK in order to provide a pragmatic network of tertiary and secondary level services. We ... - Stakeholder organisations
The following organisations have registered as project stakeholders or are partners in the National Epilepsy Audit: ... - Methodology and data collection
Project Methodology The Epilepsy12 national audit comprises three components: service descriptor, clinical audit ...