BackgroundThere is increasing recognition of the importance of delivering value-based health care, where value is assessed by measuring health outcomes against the cost of delivery. This approach can reduce healthcare utilisation.MethodsThe International Consortium for Health Outcomes Measurement convened an international working group of experts in epilepsy, people with epilepsy and their representatives. The group developed minimum sets of standardised outcomes and outcome measurement methods to support clinical decision making and quality improvement. The focus was to ensure international applicability, with a preference for measurement tools that have been validated in many settings, cultures, and languages. Measurement tools that capture all core outcomes were identified through Delphi based online consensus methods, with consecutive rounds of voting supplemented by open discussion and external validation surveys.Results22 core outcomes were identified, of which many non-seizure outcomes were included: anxiety, depression, suicidality, memory and attention, sleep quality, somnolence, and neurodevelopmental status. Measurement tools including PROMS were recommended based on their evidence of strong measurement properties, feasibility, acceptability to people with epilepsy and cross-cultural applicability. Different age-appropriate measurement instruments have been recommended for infants, children, adolescents and adults with epilepsy.ConclusionImplementing this set of outcomes and measurement methods in practice should establish the use of patient-centred outcomes and ensure holistic care. Widespread adoption of consistent outcome measurement can facilitate big-data science, accelerate comparative research and lead to improved care.

ObjectivesMemory impairment is an extremely common complaint in people with epilepsy (PWE). The purpose of our cross sectional study was to identify factors associated with self-reported memory impairment in PWE.Methods514 PWE and 52 controls completed the Liverpool Adverse Event Profile, a 19 item questionnaire which includes items on memory and depression and provided clinical data on age, sex, medication, seizure onset, frequency and severity. For memory impairment, sleep disturbance, depression and seizure type scores were dichotomised into minor deficits (Likert scores 1 and 2), and major deficits (Likert scores 3 and 4).ResultsIn univariate analysis we found significant associations for mono vs polytherapy (χ2=14.85, p<0.001); minor/major depression (χ2=29.41, p<0.001); minor/major sleep disturbance (χ2=65.34, p<0.001); seizure freedom/persistence (χ2=14.40, p<0.001), the number of seizures in the last four weeks (p<0.001, U=17530.50, z=−5.11, but not sex, mean age of onset, mean duration of epilepsy or seizure type. Multinomial logistic regression revealed that sleep disturbance (p<0.001), AED poly therapy (p=0.004), depression (p<0.001) all retained significance whereas seizure persistence did not (p=0.377). Applying ANOVA to examine mean age with memory deficit outcomes, older age was significantly linked to poorer memory (F=3.34, p=0.002).ConclusionsSleep disturbance, poly therapy and depression are potentially treatable factors associated with self-reported memory impairment in PWE.

Background We are doing a multicentre, randomised controlled trial evaluating the effectiveness and cost-effectiveness of a two-day Self-Management education course for epILEpsy (SMILE (UK)), which was developed in Germany (MOSES). Methods We recruited participants attending epilepsy clinics in SE England, reporting 2 or more seizures in the prior year. The primary outcome is patient-reported quality of life. Secondary outcomes include seizure frequency, psychological distress, and stigma among other variables. This presentation describes important characteristics of participants at baseline. Results Of 404 participants recruited, mean age was 42 years, 75% were of white ethnicity, and 46% were male. Epilepsy had been diagnosed a median of 18 years previously, 72% reported one or more seizures in the prior month, and 46% reported another significant medical and/or psychological condition. Psychological distress symptoms endorsed on the Hospital Anxiety and Depression Scale suggest case or borderline case rates of Anxiety of 54%, and of Depression of 28%. The average epilepsy-specific quality-of-life (QOLIE-31) score was 66 (maximum 100). Discussion This group of participants recruited via epilepsy clinics had chronic, poorly controlled epilepsy. About half reported other significant conditions and borderline or case-level symptoms of anxiety. The relationship between these and other characteristics will be presented.

OBJECTIVE:To ascertain the frequency of self-reported symptoms in patients taking antiepileptic drugs (AED).METHODS:We included patients on carbamazepine (CBZ) n = 36, valproate (VPA) n = 21, levetiracetam (LEV) n = 12, phenytoin (PHT) n = 11, lamotrigine (LTG) n = 20, patients not taking anticonvulsive drugs n = 19, and healthy control subjects (CTRL) n = 41 to complete the Liverpool Adverse Event Profile (LAEP).RESULTS:The mean LAEP scores were CBZ/PHT/LEV/VPA/LTG/noAED/CTRL = 44.97/42.00/41.00/40.33/32.42/42.00/30.80. LEV scored overall in the same range as the older AED but had a different adverse effect profile with self-reported anger (33%) and shaky hands (42%) particularly frequent. Patients with depression or uncontrolled epilepsy had significantly higher LAEP scores than patients without depression or uncontrolled epilepsy.CONCLUSION:Our unblinded observational study of self-reported symptoms suggested LTG was overall the drug with the least self-reported symptoms. Larger studies are needed to determine whether this was a truly significant difference. LEV had a different side effect profile to older AED. Confounding factors were depression and uncontrolled epilepsy. This observation should be further tested with randomized studies.