Abstracts

Rationale: PatientsLikeMe , a free online platform, launched their Epilepsy Community in the USA in January 2010. Data exports for exploratory analyses (March 2010¹ and September 2010) provide insight into experiences of patients with epilepsy. This analysis assesses the impact of epilepsy on patients lives by describing the severity of epilepsy-related symptoms, treatment side effects and health-related quality of life (HRQoL).Methods: The PatientsLikeMe platform allows patients with epilepsy to record, monitor and share their socio-demographic and clinical characteristics, treatments, symptoms and seizure frequency/severity. The platform enables assessment of pre-defined symptoms (anxiety, depression, fatigue, headache, insomnia, memory problems, pain, problems concentrating, somnolence), perceived side effects, and rating of their severity; as well as longitudinal assessment of Patient Reported Outcomes (e.g. QOLIE-31/P, HADS).Results: By September 2010, 1838 users diagnosed with epilepsy had registered (mean age: 36.5 years; 71.7% female; mean time since diagnosis: 16.7 years). Of patients with treatment information (n=1073) 53.4% were on polytherapy and 82.5% on newer AED(s). The co-morbidities most frequently reported (n=1719) were migraine (28.3%), anxiety disorder (17.2%), and major depressive disorder (13.6%). Of the patients who completed the pre-defined symptom list at least once (n=1341; 73.0%), 88.1% patients reported ?1 moderate/severe symptom(s) (36.4% 1 3 symptoms, 36.1% 4 6 symptoms, 15.6% 7 9 symptoms), at first assessment. Symptoms most frequently reported as moderate/severe (Figure 1) were memory problems (60.5%), problems concentrating (53.4%), fatigue (49.5%), and somnolence (42.5%). 20.6% of patients reported perceived side effect(s) they associated with treatment; most frequently fatigue and somnolence. QOLIE-31/P and HADS were completed by 691 patients. Patients experiencing ?1 seizure during the last 4 weeks before assessment reported significantly lower HRQoL and higher levels of depression and anxiety than those not reporting seizures (all p-values <0.005; Figure 2). This was even more pronounced in patients reporting ?1 generalized tonic-clonic (GTC) seizure compared with no seizures (all p-values <0.0001). The largest differences were observed in the QOLIE-31/P Seizure Worry and Social Function domains.Conclusions: The majority of PatientsLikeMe Epilepsy Community members reported moderate/severe epilepsy-related symptoms; most frequently cognitive problems, fatigue and somnolence. The occurrence of seizures (particularly GTC), was associated with significant decrements in HRQoL and increased depression and anxiety. These findings highlight the impact of epilepsy on patients lives. The PatientsLikeMe platform enables patients to monitor treatments and key health outcomes in a standardized way. This could help minimize the likelihood of omitting key information when consulting with physicians, and may lead to improved disease management.