Abstracts

Rationale: Approximately 300,000 (1 in 100) Canadians are affected by epilepsy (Tellez-Zenteno et al 2004). Epilepsy can severely impact the independence, productivity and overall quality of life of patients. This report provides the findings of the first Canada-wide survey conducted to explore the impact of epilepsy on life and health among adults living with the disorder. Methods: A nationwide online or paper survey was conducted August-October 2011 among adults living with epilepsy. The survey was developed in collaboration with representatives from community based epilepsy agencies in both official languages (French and English). It included questions on seizure control, the impact of epilepsy on daily life and access to healthcare and support. Subjects volunteered to participate anonymously in the survey through media advertisements. Results: 671 respondents age 18 years and older volunteered to participate. 50% were diagnosed with epilepsy under 16 years of age and had been living with the condition on average for 23.5 years. The most commonly reported seizure types were tonic-clonic (48%), complex partial (37%), absence (32%) and simple partial (28%). Most patients (82%) required medications to control seizures and had been treated on average with 3.9 anti-epileptic drugs (AEDs). Only 3% of participants had achieved seizure freedom (no seizures at all), while 46% had <50 and 16% had >50 seizures per year. Most (61%) had at least one current comorbidity. Patients reported that lack of independence (56%), impoverished social life (38%), stigma/discrimination (38%), difficulties in maintaining employment (31%) and relationships (35%) were the most negative aspects of living with epilepsy. Medication side effects (63%), memory impairment (60%), injuries (44%) and learning difficulties/cognitive decline (40%) had the greatest negative impact on respondents' health. On average, respondents waited 4 years from their first seizure to be diagnosed with epilepsy. 40% were managed by their general practitioner or family doctor regularly, and only 30% have had a consultation with an epileptologist and waited an average of 9.8 months to see an epilepsy specialist. Conclusions: This survey reveals that epilepsy imposes a substantial burden on the lives of Canadians with epilepsy. Lack of independence, social life, employment and relationship opportunities are most affected by continuing seizures. Better seizure control, timely diagnosis and access to specialized care and support services could improve the burden of the disorder and help remove the barriers that people with epilepsy face on a day-to-day basis