Epilepsy (Canada) Qualitative 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 relating to qualitative questions and the qualitative components of mixed methods questions. For information on the search strategy for each quantitative question, please review the Epilepsy PSP Quantitative Verification Form.

Qualitative Evidence Check Method:

A member of the Information Specialist team (with experience in qualitative research methods) used the following strategy to determine whether the qualitative summary questions were answered, partially answered, or unanswered. For each qualitative question, the Informational Specialist team member:

• Identified the key components of each question using the PICo (Population, Inter, and Context) framework. More information on the PICo framework can be found in the “Search Terms” section of this Question Verification Form.
• Established relevant search terms based on the content of each question (e.g., “stigma,” “healthcare workers”). Every question had its own set of search terms; these terms are listed in the 2nd column of Table 1 below.
• Conducted literature searches in 5 different databases (Cochrane, Medline, EMBASE, CINAL, and SCOPUS) using specific search terms for each question.
• Reviewed the title and abstract of any seemingly relevant studies identified in the literature search and classified each question as “fully answered,” “partially answered,” or “not answered.”

If a summary question was answered, the reference(s) was recorded and the evidence check for that question was considered complete. If a reference addressed a summary question in part, the question was marked as partially answered and the relevant reference(s) were recorded; the original question was reworded to reflect only the unanswered part. If a summary question was not answered by the evidence check, it was labelled as unanswered.

If the Information Specialist team member was unsure whether a summary question was answered by a citation, the question and citation were discussed by at least three team members and a consensus decision was made. 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 other disciplines or disease areas.

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

Evidence checking was conducted using peer-reviewed research studies and (where possible) systematic and narrative reviews. The Information Specialist team member conducted literature searches in 5 different research databases. The databases were approved by the Steering Group.

Unlike quantitative research, qualitative research is not commonly compiled into systematic reviews and syntheses. The Information Specialist team asked the Steering Group to consider non-review level studies as sufficient evidence for qualitative summary questions. The Steering Group agreed to this request.

Evidence that was used to check the qualitative summary questions included: qualitative studies or case reports and case series with qualitative study components, and when possible systematic reviews, narrative reviews, and realist reviews.

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

Cochrane Database of Systematic Reviews

Research Databases

• Medline
• EMBASE
• CINAL
• SCOPUS

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
• Epilepsy Ontario’s Website

What search terms did you use?

For each qualitative summary question, search terms were developed using the PICo framework. PICo stands for Population (P), Interest (I), and Context (Co). Population refers to the problem, condition or disease being studied (e.g., epilepsy). Interest is a defined event, activity, experience or process of the problem in question. Context refers to the setting or distinct characteristics of the situation in which the phenomenon is occurring (e.g., country, location, and/or setting).

For more information on the PICo framework for qualitative research, please see Cooke, A., Smith, D. & Booth, A. (2012). Beyond PICO: the SPIDER tool for qualitative evidence synthesis. Qualitative Health Research, 22(1435). doi: 10.1177/1049732312452938 and this guide: https://libguides.murdoch.edu.au/systematic/PICO.

The PICo framework was presented to and approved by the Steering Group using the following example:

Example Question: “How can caregivers best provide support for adults and children who experience seizures?”

• P - Caregivers and/or care giver; epilepsy or seizures or convulsions
• I - Support systems and/ or social support systems
• Co - Canada; North America; The United States

The search terms for each question varied based on the population, interest, and context of the question. The search terms have been listed in column 2 of Table 1 below.

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) were considered.

Study types included qualitative studies or case reports and case series with qualitative study components, and when possible systematic reviews, narrative reviews, and realist reviews.

Opinion letters and commentaries were not included in the evidence check.

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?

The question verification process took place from May 28, 2020 to July 28, 2020.

Any other relevant information

In some cases, evidence outside the field of epilepsy was used to check the status of some questions. Qualitative research is most often used to gain a stronger understanding of the underlying principles of a subject.

When possible and when the search using epilepsy-specific key words yielded few results, the search terms were broadened and evidence in related areas was reviewed. For example, searching for epilepsy-specific evidence on the question: “what knowledge barriers do health care providers have about anti-seizure drugs and the potential adverse effects of anti-seizure drugs,” yielded no relevant results. Accordingly, the search was expanded to include studies relating to communication between health care providers, education around the adverse effects of drugs, etc. that could help inform or answer the original summary question. Keywords for these additional searches are outlined in the 3rd column of Table 1 below.

The Information Specialist team brought this suggestion to the Steering Group. The Group approved the approach.

As well broadening the search to other fields, the Information Specialist team also reviewed grey literature (e.g., Epilepsy Ontario’s website) to understand important background context for certain questions. When starting to evidence check a particular question, an initial Google search was typically conducted. This search identified Epilepsy service organizations from which grey literature could be pulled and used to understand important background context for questions. There are several organizations in both Canada and the United States working in this area that recommend the implementation of similar guidelines. Epilepsy Ontario’s guidelines were reviewed often for this evidence check because it is a local service organization that is known to the Steering Group. The 4th column of Table 1 below outlines links to grey literature that was reviewed to understand the context of certain summary questions.