New Survey Results Challenge Patients to Take Charge of Their Health

The goal for epilepsy treatment today is ‘no seizures, no side effects’. But a new survey by the Epilepsy Foundation and the American Epilepsy Society has found nearly half of people with active seizures have a low expectation of achieving it.

One should never give up hope that their condition will improve. Most of those surveyed said the search for better seizure control is a partnership with their doctors. According to the survey, that is not always the case.

Here is what the survey found:

Only about half of the people surveyed said that their doctors ever discussed with them other treatment options or what to expect from their treatment.

• Recommendation: Patients can improve communication by taking an active role in their medical care, writing a list of questions before seeing the doctor, and making notes of the answers.
  
  
  

One in four said they did not know what their doctor would consider to be a significant improvement in seizure control.

• Recommendation: Having a treatment goal is key to staying motivated and managing epilepsy. Patients should discuss and come to an agreement with their doctor on what would be a significant improvement in control.
  
  
  

About half of those surveyed also said their doctors did not discuss epilepsy’s impact on such things as day-to-day activities, mood and difficulty sleeping.

• Recommendation: It is not always easy for patients to tell what is or is not related to epilepsy or its treatment. Patients can help their doctors by sharing all they feel and experience, such as feelings of depression, problems with memory or thinking, often feeling sleepy, and other feelings or sensations that do not feel normal.
  
  
  

About one in five feels they are more concerned than their doctor about medication side effects.

• Recommendation: By sharing what they feel and experience, patients also alert their doctors to potential medication side effects. This allows doctors to make adjustments in the dosage or change medications that may reduce or eliminate unwanted side effects.
  
  
  

One in ten said they underestimate the number of seizures when talking to their doctors, either because they fail to record their seizures, are unable to recall or even to know when a seizure happens.

• Recommendation: Patient seizure reports are often best estimates. But even they provide vital information essential to the best of care.
  
  
  

A small number of those surveyed said they reported fewer seizures than they experienced because they did not want their doctor to know how many seizures they were actually having.

• Recommendation: Patients who under report seizures deprive themselves of their best chance for reducing seizures and improving their condition.