Epilepsy (Canada) Quantitative 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

Epilepsy PSP

Please describe the scope of the PSP

The aim of this PSP is to identify the unanswered questions about epilepsy from patient, carer, and clinical perspectives and then prioritise questions that patients, carers, and clinicians agree are the most important for research to address.

The scope of the epilepsy PSP is defined as:

• Diagnosis and cause
• Treatment options
• Care and management (includes social, emotional and psychological well-being)
• Co-existing conditions

The PSP will exclude from its scope questions about:

• Access to services
• Treatment of epilepsy outside of Canada

The PSP Steering Group has advised on and agreed to the approach to evidence checking to determine whether questions posed by the epilepsy community are true uncertainties. Members of the Steering Group include patients, carers, and clinicians, as individuals or representatives from a relevant group.

The evidence check portion of the PSP was completed by the Information Specialist team, made up of staff from the Knowledge Translation Program at Unity Health Toronto.

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

Based on suggestions from the epilepsy community, the Steering Group approved a set of 198 summary questions. The Information Specialist team organized questions into the three question types: quantitative (n = 165), qualitative (n = 32), and mixed methods (quantitative and qualitative) (n = 1).

The strategy on this verification form outlines the approach taken to search for evidence syntheses relating to quantitative questions and the quantitative components of mixed methods questions. For information on the search strategy for each qualitative question, please review the Epilepsy PSP Qualitative Verification Form.

Part A:
Working with a Library Technician at the Knowledge Translation Program at Unity Health Toronto, a set of full-text systematic reviews, clinical practice guidelines, and syntheses suggested by the Steering Group were collated into EndNote (version X7.7.1).

Part B:
The internal EndNote search function was used to search the pool of evidence syntheses relating to epilepsy, seizures, and convulsions (see Part A). A member of the Information Specialist team searched for key terms from each question using the “PDF” “contains” function within EndNote (see Table 1 below). A member of the Information Specialist team cross-referenced the summary question with the title results of the search, starting with the most recent reviews first. If a study title seemed relevant, the team member searched the full PDF for key terms from each question. The team member reviewed the sentences surrounding each keyword and, if relevant, the study conclusion.

After recognizing that many questions remained unanswered by syntheses, the Steering Group approved considering information from background and discussion sections of syntheses as relevant evidence.

If a full summary question was answered, the reference was recorded and the evidence check for that question was considered complete. If a reference addressed a question, but clearly stated that “more evidence is needed” to answer the question, the question was marked as unanswered and the relevant reference was recorded. Other search results for Part B continued to be reviewed.

If part of a summary question was answered, the team member recorded which parts of the question were answered and associated references. The team member rewrote the question to reflect only the unanswered piece.

If a team member was unsure whether a citation was answered by a review, the question and citation were discussed by at least three team members and a consensus decision was made. Any outlying questions on evidence interpretation not solved by consensus were escalated for review by the Information Specialist team’s Scientist.

Questions that required additional review were brought to a subgroup of the Steering Group, made up of a patient, a carer, and a clinician for consideration.

Upon completion of the evidence check, the Steering Group reviewed the overall results. This included reviewing questions marked as answered or partially answered by background and discussion sections of reviews.

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

Evidence checking was conducted across clinical guidelines and systematic reviews.

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

Systematic Reviews:

• Cochrane Database of Systematic Reviews
• Cochrane Epilepsy

Clinical Guidelines:

• Scottish Intercollegiate Guidelines Network (SIGN)
• National Institute for Health and Care Excellence (NICE)
• Steering Group confirmed that no relevant Canadian Royal College guidance exists on this PSP topic.

Additional Sources Suggested by PSP Steering Group:

• International League Against Epilepsy (ILAE)
  
  • A member of the Information Specialist team reviewed all resources on the ILAE site and extracted English clinical practice guidelines and systematic reviews
• World Health Organization (WHO): Epilepsy: a public health imperative

What search terms did you use?

Part A - Search Terms for Evidence Syntheses:
Terms for Epilepsy, seizures, and convulsions were searched. Truncation and search features were utilized to ensure that all relevant word variations were searched.

The core Cochrane search:
#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 #1 or #2 or #3 in Cochrane Reviews

Part B - Search Terms Within EndNote:
Root words of key terms within each question were searched using the “PDF” “contains” function within EndNote (see Table 1). For example, for the question “are people who experience seizures at an increased risk of having autism?,” the term “autis” was searched for within each of the evidence synthesis PDFs.

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

No date limitations were included.

English only (or translated into English) knowledge syntheses were considered.

Names of individuals who undertook the evidence checking

Information Specialist team members:
Danielle Kasperavicius, Jeanette Cooper, Kyle Silveira, Dr. Kathleen Gamble (qualitative specialist)

Library Technician: Alissa Epworth
Scientist: Dr. Christine (Tina) Fahim

On what date was the question verification process completed?

Part A searches were run on May 26, 2020. The question verification process (Part B) took place from May 28, 2020 to July 28, 2020.

Any other relevant information

• For co-existing conditions questions, adverse events of anti-seizure drugs (ASDs) were not considered as co-existing conditions
  
  • For example, for the question “what causes memory problems associated with seizures,” reviews outlining memory loss as an adverse event of an ASD were not considered.
• Acute incidents (e.g., respiratory depression from ASDs) were not considered long-term disorders.
• For questions relating to reproduction and pregnancy, effects on the pregnant person and the fetus’ health were considered, unless specified otherwise.

Table 1: Summary Questions and Key Words Searched in EndNote for Part B of the Quantitative Evidence Check