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of everyone affected by epilepsy

Epilepsy groups challenge patients to take charge of their health

20 February, 2008

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.

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:

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."