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."
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.
Epilepsy, also known as a seizure disorder, is a medical condition that produces seizures affecting a variety of mental and physical functions. A seizure occurs when a brief, strong surge of electrical activity affects part or all of the brain. When a person has two or more seizures, they are considered to have epilepsy. For 70 percent of people with seizures and epilepsy, the cause of their condition is unknown.
More than three million people in the U.S. have some form of epilepsy with about 200,000 new cases of seizure disorders and epilepsy diagnosed each year. It is the third most common neurological condition in adults, after Alzheimer's and stroke. More than three million people in the U.S. have some form of epilepsy. About 70% of all epilepsy can be controlled with medicines. The remaining 30% of medically unresponsive cases account for 80% of the cost of epilepsy. An Epilepsy Foundation report published in 2000 revealed that epilepsy costs the nation more than $16.6 billion a year in health care and unemployment.
About the American Epilepsy Society
The American Epilepsy Society is one of the oldest neurological professional organizations in the nation, with roots dating to 1898. The Society promotes research and education for professionals dedicated to the prevention, treatment and cure of Epilepsy. Membership in the Society is made up of clinicians specialized in the epilepsies, researchers investigating basic and clinical aspects of epilepsy, and other health-care professionals who play an active role in the treatment of seizure disorders. Members represent pediatric and adult sides of epilepsy.
About the Epilepsy Foundation
The Epilepsy Foundation, a national voluntary health organization established in 1967, works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure.
|SOURCE American Epilepsy Society; Epilepsy Foundation|
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