Identifying and Prioritising Epilepsy Treatment Uncertainties
For which topic were research priorities identified?
In which location was the research priority setting conducted?
Europe - United Kingdom
Why was it conducted at all?
Failure to acknowledge and address genuine treatment uncertainties has caused unnecessary iatrogenic harm. The authors define an uncertainty as a question that cannot be sufficiently answered by a systematic review of the literature. The database of the uncertainties of the effects of treatment (DUETs) is a collection of ‘known unknowns' that enables patient prioritised research.
What was the objective?
to identify and prioritize uncertainties regarding epilepsy treatment from people with epilepsy, their carers and epilepsy clinicians
What was the outcome?
a list of 2 research questions
How long did the research prioritization take?
No information provided.
Which methods were used to identify research priorities?
How were the priorities for research identified exactly?
Step 1: 5 separate focus groups: 3 with patients and carers and 2 with clinicians and health professionals, focus groups asked to identify questions addressing treatment uncertainties. Step 2: data processing: thematic analysis, patients and carers identified 188 questions and professionals identified 210 questions, patients/carers and professionals only posed 11 identical questions, top 2 questions were then emerged
Which stakeholders took part?
Clinicians, patients, carers. 41 participants: 19 patients, 6 carers, 16 healthcare professionals: 4 adult neurology consultants, 2 paediatric neurology consultants, 1 learning disability consultant, 3 neurology registrat, 1 GP, 4 epilepsy nurses, 1 genetic counsellor, 1 dietician.
How were stakeholders recruited?
Patients were invited from several sources: clinic appointments, previous involvement in local projects with the Wales Epilepsy Research Network (WERN), and membership of local charity groups.
Were stakeholders actively involved or did they just participate?
Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.