Epilepsy Question Verification form

The purpose of this Question Verification Form is to enable Priority Setting Partnerships (PSPs) to describe clearly how they checked that their questions were unanswered, before starting the interim prioritisation stage of the process.

The JLA requires PSPs to be transparent and accountable in defining their own scope and evidence checking process. This will enable researchers and other stakeholders to understand how individual PSPs decided that their questions were unanswered, and any limitations of their evidence checking.

Name of the PSP

UK Epilepsy Priority Setting Partnership (PSP)

Please describe the scope of the PSP

The scope of the UK Epilepsy PSP is defined as:

The health research priorities of people with epilepsy to include:

• Causes: to include prevention (including the impact of epilepsy on antenatal and maternal health), co-morbidities
• Diagnosis: to include access to health services
• Treatments: to include anti-epileptic drugs, surgery, treatment side effects, co-morbidities (including those as a consequence of treatment), and epilepsy that does not respond to treatment
• Clinical management of epilepsy: to include risk of epilepsy related deaths (including Sudden Unexpected Death in Epilepsy – SUDEP), service access, neurodevelopment, co-morbidities, social and psychological factors, and emerging areas such as epilepsy in older people
• Dissemination of research breakthroughs to influence epilepsy care, practice and policy: to include medical education and pathways to improved care

The PSP will exclude from its scope questions about:

• Social research
• Health & Social funding
• Non-UK based research
• Functional seizures

Please provide a brief overview of your approach to checking whether the questions were unanswered

From the 5,400-plus priorities submitted by the epilepsy community in response to the first survey, 97 summary research questions were drafted.

The Canadian Epilepsy PSP, whose Top 10 was published in September 2021, collaborated with the UK Epilepsy PSP, sharing their comprehensive evidence database for use as the foundation of our question verification strategy. The evidence database was updated and expanded to include any additional search topics/terms – such as data, for example.

The search strategy protocol outlined by the Canadian Epilepsy PSP was followed to ensure consistency of approach when updating the shared evidence database (for more information, see: Epilepsy (Canada) PSP

The UK Epilepsy PSP team checked these 97 questions against this updated and expanded evidence database to determine which of the summary research questions drafted were answered, partially answered or unanswered by the existing literature. The expertise of the Steering Group was then utilized as a final sense check for the results of the evidence check ahead of the second, shortlisting survey.

Please list the type(s) of evidence you used to verify your questions as unanswered

Evidence checking was conducted using the Canadian Epilepsy PSP evidence database, which was updated and expanded to include any additional evidence (e.g., data). To ensure consistency the same type(s) of evidence were used to verify our questions: clinical guidelines and systematic reviews (see list of sources below).

Please list the sources that you searched in order to identify that evidence

The following evidence databases were searched, which includes resources identified by the JLA as the minimum required to confirm uncertainties:

• Updated Canadian Epilepsy PSP evidence database – see above for more information
• Cochrane reviews
• Cochrane Epilepsy
• NICE guidelines: NG217, TA753, NG144, NG144, IPG678, IPG671
• SIGN clinical guidelines – last updated 2018

What search terms did you use?

Search terms relating to epilepsy, seizures and convulsions were employed, as well as Boolean operators and ‘wildcard’ search features, to ensure that all relevant word variations were searched.

The core search terms included:

#1 MeSH descriptor: [Seizures] explode all trees #2 MeSH descriptor: [Epilepsy] explode all trees #3 (epilep* or seizure? or seizing or convulsion*):ti,ab,kw #4 Key term, specific to question – i.e., vaccinations, hormones etc.

Please describe the parameters of the search (eg time limits, excluded sources, country/language) and the rationale for any limitations

The evidence databases were searched from inception – no date limits were set. Publications other than clinical guidelines and systematic reviews – including original research publications, opinion letters and commentaries – were not searched. English-language only publications were searched and included for consideration.

Names of individuals who undertook the evidence checking

Mr Adam Kovac, University of Edinburgh
Ms Anna Norton, Epilepsy Research Institute UK (formerly Epilepsy Research UK)
Dr Caoimhe Twohig-Bennett, Epilepsy Research Institute UK (formerly Epilepsy Research UK)

On what date was the question verification process completed?

Question verification commenced on Monday 18th July 2022 and was completed on Friday 5th August 2022.

Any other relevant information

Not applicable.