Epilepsy groups challenge patients to take charge of their health

Less than half of patients with active epilepsy in the United States are informed by their doctors about treatment options, according to a survey by the American Epilepsy Society and the Epilepsy Foundation.

Fewer than half (47 per cent) of those surveyed said their doctor discussed alternative treatments with them, with neurologists more likely to do so than primary care providers. Least likely to be discussed is surgery, a finding that the authors suggest means that a significant number of potential surgery candidates might not be aware of this option. The survey also suggests that people with poorly controlled seizures do not get referred to specialised epilepsy centres that focus on more difficult-to-control epilepsy.

Around a quarter of patients surveyed said they did not know what their doctors would rank as a significant improvement in seizure control. While more than half (51 per cent) of all patients feel that a 90 per cent reduction or no seizures at all would be a significant improvement, only 35 per cent feel their doctor would agree.

Sandra Dewar, of the University of California, Los Angeles Seizure Disorder Center, commented on the findings:

"This suggests a gap in communication and a lack of mutual agreement on what the treatment goal should be. Social issues also are frequently left unaddressed. Only about half of those surveyed said their doctors discussed epilepsy's impact on day-to-day activities, mood, and difficulty sleeping. Patients expressed a wide variety of concerns and fears regarding their epilepsy, such as telling others, being treated differently, inability to drive, becoming a burden on the family, and fear of dying -- issues that are infrequently discussed with patients."