Epilepsy and Disability – An International Consensus Conclave

In North America, more than 3 million people have epilepsy, with an incidence of 50/100,000 per year and prevalence of 5-10/1000. Primary care physicians provide treatment for the majority of people with epilepsy in the United States and Canada. Barriers to neurological specialty access for people with epilepsy include the variable distribution of neurologists, the distance to providers, and the need for a referral to a specialist. Accessibility, cost, prejudice, stigma, superstition, and lack of patient or primary care physician knowledge may limit use to only a small portion of people with epilepsy, despite the availability of extensive resources.

Cross Cultural Aspects of Epilepsy

Members of the International League Against Epilepsy, Neuropsychiatry Commission, met in Chennai, India with members of the Indian Epilepsy Association and the Indian Epilepsy Society on 15 and 16 February 2008 to discuss cross-cultural aspects of epilepsy and disability. During the meeting, perspectives on disability and epilepsy from the United States, Europe, and India were presented.

Seizures and Depression

While the seizure is one component contributing to disability, the high levels of comorbidities in epilepsy also contribute to disability. Up to 30% of people with epilepsy have co-morbid depression. Data just released from the Food and Drug Administration analyzed suicidality from placebo-controlled clinical studies of 11 drugs used to treat epilepsy revealed that patients receiving AEDs had approximately twice the risk of suicidal behavior or ideation (0.43%) compared to patients receiving placebo (0.22%). The findings underscore the importance of monitoring neuropsychiatric signs and symptoms in people with epilepsy.

Disability Studies

Disability studies in North America among people with epilepsy have examined economic impact, physical health, mental health, and quality of life. One survey revealed that people with epilepsy in the U.S. had an average income roughly half that of the general public. Driving restrictions exist in all 50 states for patients with epilepsy. People with epilepsy report poorer quality of life than those without epilepsy. A Centers for Disease Control study in 2001 revealed that people with epilepsy reported 4.4 more physically unhealthy days, with 6.8 more days of pain, and 4.0 more days of recent activity limitation. People with epilepsy also reported 5.2 more mentally unhealthy days, with 5.2 more days of anxiety and 3.5 more days of insufficient sleep or rest.

Unhealthy Days

Potential contributors to unhealthy days include seizure severity, injuries, and antiepileptic drug (AED) toxicity. People with epilepsy who took AEDs reported worse quality of life than those not taking medications. In a national survey, people with epilepsy listed the worst aspects of epilepsy as being uncertainty and fear of having a seizure. Problems reported associated with epilepsy included cognitive impairments, and limitations in life-style, school, driving, and employment.

Policy Considerations

In the second day of the meeting, building on the cross-cultural information presented on day one, the participants proposed a research agenda to define the extent of disability caused by epilepsy in India. The research will inform policy and policy makers who are responsible for legislation pertaining to the government and medical assistance people with epilepsy receive in India.

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