Abstracts

Rationale: Topics for epilepsy treatment research are frequently determined by the pharmaceutical industry, occasionally by clinicians, and only rarely by patients. As part of the UK National Library for Health’s DUETs (Database of Uncertainties about Effects of Treatment) initiative, we used focus groups of epilepsy professionals and patients to generate epilepsy treatment research questions. Methods: During two 2-hour facilitated group discussions (one each for professionals and patients), we recorded all research questions generated relating to epilepsy treatment. Each participant later selected their top-ranked 40 questions from their group’s total list enabling identification of the highest-ranked pooled questions for each group. Results: The professionals (n = 10) generated 140 questions, their top-ranked themes being: (1) What are the antiepileptic drug (AED) effects on fetal neuro-development? (2) What are their effects on bone health? (3) What is the optimal treatment of status epilepticus? The patients (n = 8, females = 5, mean age 43.6 years) generated 61 questions, their top-ranked being: (1) What are the long-term liver effects of AEDs? (2) What is the best action after missing an AED dose? (3) What are the AED effects on memory? Of the top 40 professionals’ questions, 15 (37.5%) were on AED use, 9 (22.5%) on AED side effects, 7 (17.5%) on surgery, 5 (12.5%) on other non-AED treatments, 2 (5%) on depression and 2 (5%) on non-epileptic attacks; none were on physical seizure management or lifestyle. Of the top 40 patient questions, 10 (25%) were on AED use, 13 (32.5%) on AED side effects, 3 (7.5%) on surgery, 3 (7.5%) on other non-AED treatments, 7 (17.5%) on lifestyle and 4 (10%) on physical seizure management. Conclusions: Both epilepsy professionals and patients placed AED themes among their top-ranked research treatment questions, but overall patients focused more than professionals on lifestyle and physical seizure management. Research funding bodies must consider patients’ views when deciding research priorities.