Patients' Need to Spearhead Talks with Doctors about New Treatment Options

[Bernard]

Leading Epilepsy Groups Unveil New Survey Results Challenging Patients to Take Charge of Their Health

Results Demonstrate Patients' Need to Spearhead Talks with Doctors about New Treatment Options

PHILADELPHIA, Dec. 3 /PRNewswire/ -- While the nation's epilepsy specialists have adopted "no seizures, no side effects" as a major goal for people with epilepsy, a new survey shows that less than half of patients with active epilepsy are informed by their doctors about treatment options. The American Epilepsy Society and the Epilepsy Foundation today announced results from the jointly sponsored patient survey underscoring the need for enhanced patient knowledge of treatment objectives and improved patient-physician dialogue for better epilepsy care. The two organizations are raising awareness of the survey results to empower patients to seek more from their treatment to improve epilepsy control. The survey was
supported through a sponsorship by Pfizer Inc.

Fewer than half (47%) of those surveyed report that 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 might suggest that a significant number of potential surgery candidates might not be aware of this option. In fact, many people with poorly controlled seizures do not get referred to epileptologists or specialized epilepsy centers that focus on more difficult to control epilepsy.

Also striking is that one-fourth (26%) of all patients surveyed said they did not know what their doctors would rank as a significant improvement in seizure control. While more than half (51%) of all patients
feel that a 90% reduction or no seizures at all would be a significant improvement, only 35 percent feel their doctor would agree.

"This suggests a gap in communication and a lack of mutual agreement on what the treatment goal should be," said Sandra R. Dewar, R.N., M.S, of the UCLA Seizure Disorder Center.

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.

In addition, the survey found nearly half of respondents (49%) who have at least one seizure a month nevertheless say they feel their seizures are very well controlled. According to Bruce P. Hermann, Ph.D., Chair of the Epilepsy Foundation's Professional Advisory Board, "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." Dr. Hermann is Professor of Neurology and Director, Matthews Neuropsychology Lab, University of Wisconsin School of Medicine and Public Health.

"It's our role as physicians to remind patients to aim always for better seizure control, to inform them of all available medical options, and to devise a mutual plan for achieving optimal results," said Paul M. Levisohn, M.D., of The Children's Hospital, Denver, who chairs the American Epilepsy Society's Practice Committee. "We look forward to working with the epilepsy community to help raise awareness about ways to better communicate and improve epilepsy management."

Treating Epilepsy

A person with epilepsy can help control seizures by regularly taking prescribed medication, maintaining regular sleep cycles, avoiding unusual stress and working closely with the physician. Regular medical evaluation and follow-up visits are also important. However, seizures may still occur even when someone is doing everything as directed.

About the Survey

Penn, Schoen, & Berland Associates, LLC. interviewed 402 patients with epilepsy by phone from May 7 to May 10, 2007. The margin of error was +/- 4.9 percent. Commissioned on behalf of the American Epilepsy Society and the Epilepsy Foundation, the survey measured the attitudes of people with epilepsy regarding their quality of life based on concerns and challenges brought on by the condition. The survey was supported through a sponsorship by Pfizer Inc.

Leading Epilepsy Groups Unveil New Survey Results Challenging Patients to Take Charge of Their Health

 

[Bernard]

Related: What I learned from Epilepsy patients

 

[brain]

Thanks Bernard for posting that!
About time they learn something there!
GRRRRRRRRRRR!

I agree with every single word of what
you posted in the Original article! Never
telling me anything, the plan, nothing,
nada, nill, natch, zlitch, leaving me out
in the blue ~ where I have to go and get
my own Medical Records to find out what
the "heck is going on" myself!

Sounds really annoying!!

And there's supposed to be a Patient and
Doctor Relationship? HA!

But I'm lucky now that I have 3 great Doctors
who are opened and upfront where there's
communications; and at least they don't leave
me hanging at the end of the thread!

Maybe they ought to learn from the "Pros"!

Sorry - had to VENT there!

 

[RobinN]

Oh I loved that last link so much! When I first read it a year ago, it is what gave me the strength to believe what I know to be truth, goodness, and honesty from the internet. I can now fight the nay sayers that come back with .. but you can't trust everything you read on the internet. Well I couldn't believe everything that my doctors were telling me either. I have to use my brain, and my heart to know when something is right for my daughter and when it isn't.

The first article didn't go deep enough for my taste. They talk about the problem but not really any solutions, or advice as to how to change this. Having doctors willing to say "So what do you want to do about this?", really isn't helpful. Opening up the doors to alternative ideas, and being knowledgable about those therapies would do a world of good. Also if not knowledgeable today, taking the time to get updated on the subject, so the next time we visit, we could have a honest and informed discussion. Don't just tell me that diet and hormones have no role in seizure activity. This new drug is the latest on the market and really is showing positive results. I just lose all faith at the point when I find that to be a false statement.

That is how I would like to see this work.

Hey Doctors....are you listening?