Leading Epilepsy Groups Unveil New Survey Results Challenging Patients To Take Charge Of Their Health

Results of a new survey by the USA’s leading epilepsy groups have been unveiled, showing a need to challenge patients to take charge of their health and treatment options.  Less than half of patients with active epilepsy felt informed by their doctors about the different treatments available with few being referred to specialised epilepsy centres or experts.

Once again this survey, conducted by the American Epilepsy Society and the Epilepsy Foundation, shows a clear lack of communication between doctors and patients about treatment options and seizure control.  A quarter of those surveyed were not sure what doctors would rank as a significant improvement in symptoms and fewer than half surveyed reported that their doctor had discussed alternative treatments.

Such results were also reflected in another study I wrote about recently in a blog entitled, Room For Improvement In Balancing Epileptic Seizure Control and Side Effects. A similar lack of dialogue was reported between patients and physicians about balancing seizures and side effects, with over 75% saying they were suffering with side effects. 

Empowering Patients To Ask For More

What studies such as these demonstrate is the need for patients to feel empowered to ask doctors relevant questions and to seek more from their treatment.  However, this requires a fair degree of confidence, knowledge and research on the part of the patient to ensure they have the most up to date information about all the different treatments available. 

Furthermore, patients in this recent survey expressed concerns about the effect of epilepsy on their lives, with only half reporting doctors had even discussed epilepsy’s potential impact on their day to day lives.  Many had concerns about their inability to drive, whether they could become a burden on their family and the fear of dying, all of which were seldom discussed with their doctors.

Both The American Epilepsy Society and the Epilepsy Foundation hope the survey will be a tool to empower patients to seek more from their treatment and improve the overall control of their seizures.  As Bruce P. Hermann, Chair of the Epilepsy Foundation’s Professional Advisory Board explains, “there clearly is a need to improve patient expectations about what proper epilepsy control really means.  Our goal is to encourage people with epilepsy to become active partners in managing their epilepsy and to know about treatment options so they can live the lives they want to lead.  Discussion with health care professionals should not only include what to expect regarding treatment outcomes, but the impact of treatment and epilepsy on daily life.”  Let’s hope that this message gets through to not only the patients themselves, but the doctors and neurologists treating them.