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WASHINGTON -- More than 90% of patients who had surgery for drug-resistant epilepsy said it was worthwhile when interviewed up to 20 years later, even when quality-of-life indicators were not improved, researchers said here.

Results for 253 patients who underwent surgery at the Henry Ford Comprehensive Epilepsy Program in Detroit from 1993 to 2011 indicated that fewer were holding full-time jobs (23% versus 42%, P<0.001) and more were taking antidepressants (30% versus 22%, P=0.013) relative to presurgical baseline -- yet 92% agreed that "it was worthwhile to have epilepsy surgery," according to program head .

The main specific improvement in patients' quality of life was the ability to drive following surgery, Spanaki said at a press briefing held prior to her formal presentation at the American Epilepsy Society (AES) annual meeting. Patients in the survey reported that, prior to surgery, 35% were able to drive; at the time of the survey, conducted in 2012-2013, 51% said they were driving (P<0.001).

Surgery site and the procedure's effect on seizure frequency appeared to influence the likelihood of life-quality improvement.

Spanaki and colleagues searched patient records at Henry Ford Health System, identifying a total of 470 who had undergone resective surgery for epilepsy. Of those, 253 patients were available to provide responses to the questionnaire.

Mean age of respondents at time of survey was 46 (SD 13); mean age at epilepsy onset was 16 (SD 14), and mean age at surgery was 36 (SD 13). The mean delay between epilepsy onset and surgery was 20.5 years (SD 13), and mean post-surgical follow-up was 11 years (SD 5). About one-quarter of patients had follow-up of 15 years or more.

A total of 189 patients reported favorable outcomes (Engel classes I or II, representing complete seizure freedom or major improvement); the other 64 had unfavorable outcomes (Engel classes III or IV, minor or no improvement).

Those with favorable outcomes tended to show more improvement in quality-of-life indicators, but not always. The increase in driving ability was more pronounced in those with favorable outcomes (65% currently versus 38% before surgery), whereas it decreased in those with worse outcomes (11% currently versus 27% before surgery).

But full-time employment declined in both outcome groups:

• Favorable outcome: 28% currently versus 44% before surgery
• Unfavorable outcome: 8% currently versus 36% before surgery

And antidepressant use remained essentially unchanged in the favorable-outcome group from presurgical baseline (24% versus 21%).

But overall satisfaction with the surgery was pronounced in both outcome groups. Among those with unfavorable outcomes, 74% said it had been worthwhile, as did 98% of those with favorable outcomes.

, a Henry Ford neurosurgeon who helped in the study, said the high satisfaction rate in those with unfavorable outcomes basically reflected the views of those in Engel class III. In the surgery population, he said, minor improvements are not really an unfavorable outcome.

Spanaki highlighted the long average delay between epilepsy diagnosis and surgery, arguing that one message of the study is that "surgery is underutilized."

She noted that a 2011 Institute of Medicine report had made the same point, finding that only about 3,000 to 4,000 epilepsy surgeries are performed annually, yet 100,000 to 200,000 patients could be considered candidates.

Another view on the issue was presented by , and , of the University of California Los Angeles, who reported on a study of 10 patients older than 60 who had received epilepsy surgery.

They, too, had experienced long delays between seizure onset and surgery, averaging close to 30 years. Seven of the 10 patients said their delays resulted from not being offered the procedure.

Spanaki said that epilepsy patients who continue to have seizures despite medical therapy should ask their physicians about surgical options. "[Patients] need to be advocates," she said.

At the AES meeting, a consortium called that includes the AES and numerous other epilepsy organizations launched a new program designed to help patients break through the inertia that keeps them on suboptimal treatment regimens.

, of the University of Virginia in Charlottesville, explained that patients, primary care physicians, and even neurologists may be satisfied when seizure frequency is reduced substantially, but not eliminated. Consequently, there is often reluctance to alter medication regimens or seek surgery when breakthrough seizures continue to occur.

But seizure freedom is a realistic goal, Fountain said. "They may be happy with going from five seizures per week to one per month. But why not try for none?"

The new program is a web-based tool for patients, , that walks patients through their seizure experience, drug regimen, and quality-of-life issues. Ultimately, Fountain said, the goal is to encourage patients with incomplete seizure control to seek treatment at epilepsy specialty centers (One of the supporting organizations is the .)

The web tool resembles those sometimes developed by pharmaceutical companies to steer patients to doctors in pursuit of prescriptions. However, Fountain said the Vision 20/20 effort had no industry involvement or funding.

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