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.
Summary Question |
Keywords Searched in Medline,
|
Additional Search Terms from Relevant Topic Areas |
Grey Literature Sources Used to Understand Context |
| Q40: How can healthcare professionals best communicate diagnostic information between each other and people who suffer from epilepsy or other seizure disorders? | Seizures, epilepsy, or convulsions; healthcare workers; communication; diagnostic, or diagnosis. |
Health care workers and/or health care providers; interprofessional communication; communication barriers; diagnostic information |
Not applicable |
| Q76: What knowledge barriers do health care providers have about anti-seizure drugs and the potential adverse effects of anti-seizure drugs? | Seizures, epilepsy, or convulsions; healthcare providers; knowledge barriers; adverse effects of drugs or AED | Physicians; adverse effects of drugs or AED; barriers and/or facilitators; communication | Not applicable |
| Q102: How do healthcare providers and patients collaborate to choose the most appropriate treatment option? |
Seizures, epilepsy, or convulsions; decision making and/or shared decision making; treatment and/or treatment options; healthcare providers |
Shared decision-making; patient and/or provider communication; treatment plan | Not applicable |
| Q122: What are the strategies that can be implemented in schools to support students with seizures or epilepsy? |
Seizures, epilepsy or convulsions; education and/or school; support systems; barriers and/or facilitators |
Not applicable | https://epilepsyontario.org/ |
| Q123: What community/government social programs can provide support for people who experience seizures? |
Seizures, epilepsy, or convulsions; community support; social support; municipal and/or provincial and/or federal; government; people living with seizures |
Not applicable | https://epilepsyontario.org/ |
| Q124: How can caregivers best provide support for adults and children who experience seizures? |
Seizures, epilepsy, or convulsions; caregivers; support or support systems; adults and/or children living with seizures |
Not applicable | Not applicable |
| Q125: How can access to resources/supports for people who experience seizures be optimized? |
Seizures, epilepsy or convulsions; access to services; service access; barriers and/or facilitators; social support |
Not applicable | https://www.who.int/health-topics/epilepsy#tab=tab_1 |
| Q126: How do people experience stigma surrounding seizures? |
Seizures, epilepsy or convulsions; stigma; lived experience; patient experience |
Not applicable |
https://www.who.int/health-topics/epilepsy#tab=tab_1
|
| Q127: How does being treated differently impact quality of life for people who experience seizures? |
Seizures, epilepsy or convulsions; quality of life; stigma; self-management strategies; coping mechanisms |
Not applicable | Not applicable |
| Q128: Why are seizures stigmatized in society? |
Seizures, epilepsy or convulsions; stigma and/or social stigma; causes |
Not applicable | Not applicable |
| Q129: How can we reduce or minimize the stigma around epilepsy and seizures? |
Seizures, epilepsy or convulsions; stigma and/or reduction of stigma; communication; social awareness |
Not applicable | https://epilepsyontario.org/ |
| Q130: How should work places accommodate employees with seizures? |
Seizures, epilepsy or convulsions; employment; law and/or guidelines; social support; accommodation |
Not applicable | Not applicable |
| Q131: How can people who experience seizures approach discussions about their seizures with an employer to effectively develop accommodation |
Seizures, epilepsy or convulsions; employment; communication; self-management strategies; social support; workplace accommodation |
Not applicable | Not applicable |
| Q132: How do people who experience seizures manage career advancement? |
Epilepsy, seizures or convulsions; employment; barriers and/or facilitators |
Not applicable | https://epilepsyontario.org/ |
| Q133: What types of discrimination do people who experience seizures face at work? |
Epilepsy, seizures, or convulsions; work place and/or employment; discrimination; stigma; quality of life |
Not applicable | Not applicable |
| Q134: What interventions can reduce workplace discrimination? |
Epilepsy, seizures, or convulsions; discrimination and/or stigma; workplace and/or employment; support systems; education and/or awareness |
Workplace; quality of life; accommodation; discrimination | Not applicable |
| Q135: What are the best ways for people who experience seizures to approach job searching/hiring process? | Epilepsy, seizures or convulsions; employment; job search | Not applicable | https://epilepsyontario.org/ |
| Q137: How can adults who experience seizures learn to manage day-to-day life/activities? |
Epilepsy, seizures or convulsions; quality of life; self-management strategies; coping mechanisms |
Not applicable | Not applicable |
| Q138: How can children’s seizures be managed, while still allowing them to experience "normal" childhood activities? | Epilepsy, seizures or convulsions; quality of life; childhood or ‘normal’ childhood; seizure management | Not applicable | https://epilepsyontario.org/ |
| Q139: How do people who experience seizures manage their interpersonal relationships? |
Epilepsy, seizures or convulsions; interpersonal relationships; quality of life; self-care; social support |
Not applicable | Not applicable |
| Q140: How do epilepsy and seizures impact sexual and reproductive health? | Epilepsy, convulsions or seizures; sexual health and/or reproductive health; quality of life; interpersonal relationships; | Not applicable | |
| Q142: What is the best way to support caregivers of people who experience seizures? |
Epilepsy, seizures, or convulsions, caregivers and/or care givers; support and/or support systems |
Not applicable | Not applicable |
| Q143: How should caregivers plan for long-term support of a person who experiences seizures? |
Epilepsy, seizures or convulsions; caregivers or care givers; quality of life; long-term care and/or support; disease management |
Not applicable | Not applicable |
| Q144: How can people who experience seizures best manage their own healthcare/seizures to achieve good quality of life? |
Epilepsy, seizures or convulsions; self-management; coping skills; quality of life |
Not applicable | Not applicable |
| Q145: What barriers prevent members of society from understanding the lived experience of people who have seizures? |
Epilepsy, seizures or convulsions; barriers and/or facilitators; lived experience; education and/or social awareness |
Not applicable | Not applicable |
| Q146: What barriers prevent healthcare providers from understanding the lived experience of their patients who have seizures? |
Epilepsy, seizures or convulsions; healthcare providers and/or healthcare workers; barriers and/or facilitators; patient experience and/or lived experience. |
Not applicable | Not applicable |
| Q147: How should healthcare professionals collaborate to ensure quality care for people who experience seizures? | Epilepsy, seizures or convulsions; healthcare providers and/or healthcare professions; quality of care; communication strategies; interprofessional collaboration | Not applicable | Not applicable |
| Q148: What are the best methods to provide information about seizures to patients and their caregivers? |
Epilepsy, seizures or convulsions; health education and/or awareness; patient-provider relationship; communication and/or communication strategies |
Not applicable | Not applicable |
| Q149: How can patients and caregivers best advocate for quality healthcare for individuals who experience seizures? | Epilepsy, seizures, or convulsions; patient advocacy; delivery of care; quality of care | Not applicable | Not applicable |
| Q153: How can caregivers (e.g., parents) manage fear associated with their dependent’s seizures? |
Epilepsy, seizures or convulsions; caregiver or care giving; social support systems; self-care; coping mechanisms |
Not applicable | Not applicable |
| Q154: How can people who experience seizures manage the fear associated with their seizures? |
Epilepsy, seizures or convulsions; self-management; social support system; fear; quality of life |
Not applicable | Not applicable |
| Q155: What are the social and emotional impacts of seizures for people who experience them? |
Epilepsy, seizures or convulsions; self-care or self management; fear and/or anxiety and/or emotional impact |
Not applicable | https://epilepsyontario.org/ |
|
Q198: What are the best strategies to disseminate information regarding co-existing conditions to healthcare providers and the general public? |
Epilepsy, convulsions or seizures; health promotion strategies; education and/or awareness; Health care providers and/or healthcare workers. |
Health promotion and/or education; patient advocacy; health care provider education; awareness; advocacy |
Not applicable |