Patient Survey Indicates Epilepsy Specialty Services May Be Underutilized

Caroline Cassels

December 13, 2007

December 13, 2007 (Philadelphia) — Patients with active epilepsy may underutilize specialty services that could potentially offer them better seizure control and improved quality of life, a new survey suggests.

A joint initiative between the American Epilepsy Society (AES) and the Epilepsy Foundation, the survey found that 42% of patients who experience more than 1 seizure per month are treated by health professionals other than neurologists. Furthermore, only 5% are treated by epileptologists.

"These were not patients who were well controlled with their antiepileptic drugs. Nevertheless, over 40% were being treated by professionals other than neurologists or epileptologists," Paul Levisohn, MD, chair of the AES Practice Committee, said at a press conference at the recently held AES 61st Annual Meeting.

Dr. Levisohn added that epileptologists and those who specialize in the care of patients with difficult-to-control epilepsy were the treating physicians for only 5% of such patients.

Conducted in May 2007, the telephone survey focused on patient attitudes, perceptions of medical care, and epilepsy's social impact. It included 402 epilepsy patients aged 18 years or older.

No Seizures, No Adverse Effects

According to Dr. Levisohn, epileptologists and the Epilepsy Foundation have adopted a position of "no seizures, no adverse effects" as a major goal for people with epilepsy.

However, the study shows that only a quarter of patients (26%) surveyed said they did not know what their doctor would rank as a significant improvement in seizure control.

Further, 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% believe their doctor would agree this was a realistic goal.

"It is clear that there are gaps in the understanding of and agreement about treatment goals. It is very striking that only 35% felt that their doctor would agree that a major reduction or complete control of all seizures is important," said Dr. Levisohn.

Treatment Options Not Discussed

The survey also shows fewer than half of patients with active epilepsy are informed by their doctors about treatment options, including surgery.

In a follow-up interview with Medscape Neurology & Neurosurgery, Dr. Levisohn said it is not uncommon for physicians to overestimate the risk of epilepsy surgery and underestimate its benefits.

"The fact is, surgery is a viable option for many patients. When you look at the outcomes, they can be quite dramatic. Over 80% of patients with medial temporal lobe epilepsy [TLE] can become seizure free," he said.

He added that recent improvements in diagnosis have broadened the potential numbers of patients who may be surgical candidates but added that preliminary reports suggest the numbers of other types of epilepsy patients who could benefit from surgery are similar to those with TLE.

The major challenge lies in communicating information about various treatment options to nonspecialists, so they can in turn communicate this information to their patients.

Social Impact Not Addressed

The survey also found that social issues facing epilepsy patients are frequently unaddressed, with only about half of those surveyed saying their doctors asked about the impact of epilepsy on daily activities, mood, and sleep patterns.

Despite the fact that the social impact of epilepsy was infrequently discussed, patients expressed a wide range of social concerns and fears that ranged from being socially stigmatized to fear of dying.

Equally important to increasing physicians' awareness of treatment options and goals is increasing patient awareness and education.

"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 healthcare professionals should include not only what to expect regarding treatment outcomes but the impact of treatment and epilepsy on daily life," said Bruce Hermann, PhD, chair of the Epilepsy Foundation professional advisory board.

American Epilepsy Society 61st Annual Meeting. Presented December 3, 2007.

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