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Identifying and prioritising epilepsy treatment uncertainties
R H Thomas1, C L Hammond, O G Bodger
1Wales Epilepsy Research Network, Institute of Life Sciences, Swansea University, Singleton Park, Swansea, UK. rhys-thomas@doctors.org.uk
Journal of Neurology, Neurosurgery, and Psychiatry
|June 22, 2010
Summary
Patients and clinicians identified key epilepsy treatment uncertainties. Patient priorities include managing side effects and improving public awareness, while clinicians focus on non-epileptic attack disorder and pregnancy concerns.
Area of Science:
- Neurology
- Clinical Research
- Patient-Centered Care
Background:
- Genuine treatment uncertainties in epilepsy can lead to iatrogenic harm.
- An uncertainty is defined as a research question unanswerable by current literature reviews.
- The Database of Uncertainties of the Effects of Treatment (DUETs) facilitates patient-prioritized research.
Purpose of the Study:
- To identify and prioritize epilepsy treatment uncertainties.
- To gather perspectives from people with epilepsy, their carers, and clinicians.
Main Methods:
- Five focus groups were conducted (2 clinician, 3 patient/carer).
- 398 potential research questions on epilepsy treatment uncertainties were generated.
- Thematic analysis was used to rank and categorize participant-identified uncertainties.
Main Results:
- Patients prioritized questions on cognitive side effects, managing consequences, and public awareness.
- Clinicians prioritized treatment for non-epileptic attack disorder (NEAD), in utero side effects, and prescribing in pregnancy.
- Patient and clinician uncertainties highlighted practical considerations and challenging consultations.
Conclusions:
- Patient concerns focused on practical aspects: medication use, service access, and minimizing side effects.
- Clinician concerns included NEAD, sudden unexplained death in epilepsy, and pregnancy prescribing.
- Research questions are published on NHS Evidence to address genuine uncertainties and guide future research agendas.
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