American Epilepsy Society (AES): Annual Meeting

BALTIMORE – People with epilepsy – and their physicians – report that they continue to encounter barriers to optimal care, according to Dr. Sandra Helmers.

Underinsurance and a lack of insurance are among the biggest concerns for both parties. But other factors play into the equation as well, she said at the annual meeting of the American Epilepsy Society.

She and her colleagues created two surveys to identify barriers to access and treatment from the perspective of both patients and physicians. A total of 63 physicians and about 700 patients responded to the surveys, which were posted on the websites of the Epilepsy Foundation and the American Epilepsy Society.

Physicians cited health insurance and transportation issues as the biggest impediments to optimal care. Patients also expressed concern about these; they reported transportation difficulties to be the top barrier to making appointments, said Dr. Helmers, director of the adult electroencephalography laboratory at Emory University Hospital and Clinic, Atlanta.

Other serious problems from the physicians’ point of view included patients’ lack of understanding about their disease, their attitudes about epilepsy and its treatment, and their educational level.

Patients cited memory issues as a large problem. These can interfere with discussions about the nature of their disorder, keeping appointments, and even remembering to take antiepileptic drugs.

For patients, cost was second to transportation difficulties, but only slightly so. Open-ended questions elicited some details in this area:

• "I have health insurance, but it still costs a fortune to take medication and pay the copays. It’s like you’re only allowed to be healthy if you’re rich."

• "It’s mostly the expense of the drugs. I am a single parent, and it’s very tough to afford the drugs I have to have to function."

• "With high-deductible insurance, my [drug] costs me $600 per month."

• "My client has no money for appointments or medicine. The free clinic has him saturated on seizure meds and pain pills ... There is no quality of providers at the free clinics."

Memory impairment, caused by both the disorder and its treatment, was a large impediment to quality care:

• "I have memory loss due to a left temporal lobectomy ... and the surgery resulted in affecting my memory storage and retrieval."

• "After a big seizure, my memory is shot. ... I’m scared to go anywhere because I’m scared I will have another one."

• "I have kids, and it’s hard to remember to take the meds and follow instructions to the exact orders of the doctor."

Dr. Helmers pointed out some differences in responses between the two groups, which she said highlight the topic of health literacy and physicians’ abilities to fully explain the disease in a comprehensible manner. "This raises issues about our ability to educate patients ... in a culturally sensitive, understandable way," with special attention given to patients with memory issues.

Patients sometimes feared their treatment and mistrusted their neurologist – problems Dr. Helmers said may be related to poor doctor-patient communication. Some answers to open-ended questions highlighted this breakdown in communication:

• "I find it very upsetting to be constantly told to try this drug and that drug. I feel like a lab rat. ... I cry at my doctor’s visits and all they do is tell me to go to a psychiatrist. But that doesn’t work unless the neurologist and the psychiatrist work together in my treatment, especially since some of the psychiatric medications lower my seizure threshold."

• "I feel like my neurologist doesn’t care about me ... just making the money."

• "I feel that as a functioning epileptic, my voice is seldom heard. I am often not understood by my neurologist. I don’t like to see him, because I feel he doesn’t understand me or the life I lead. He does not understand that my epilepsy may influence me, but it does not define me."

With a limited number of physicians skilled in epilepsy management, patients will continue to express frustration with access to care, Dr. Helmers said. "Access to neurologists and epileptologists is being restricted, and this is probably going to get worse," she said. "This means that more and more primary care providers are going to be caring for these patients."

These data also were recently reported at an Institute of Medicine meeting in the hope that they would spur more research about barriers to epilepsy care, she said. "I think this will give us some direction for future research. The surveys show that we have a huge amount of room to improve the quality of care in epilepsy. We have to address the issues, but the question is – how?"

Dr. Helmers said she had no relevant financial disclosures.

BALTIMORE – People with epilepsy – and their physicians – report that they continue to encounter barriers to optimal care, according to Dr. Sandra Helmers.

Underinsurance and a lack of insurance are among the biggest concerns for both parties. But other factors play into the equation as well, she said at the annual meeting of the American Epilepsy Society.

She and her colleagues created two surveys to identify barriers to access and treatment from the perspective of both patients and physicians. A total of 63 physicians and about 700 patients responded to the surveys, which were posted on the websites of the Epilepsy Foundation and the American Epilepsy Society.

Physicians cited health insurance and transportation issues as the biggest impediments to optimal care. Patients also expressed concern about these; they reported transportation difficulties to be the top barrier to making appointments, said Dr. Helmers, director of the adult electroencephalography laboratory at Emory University Hospital and Clinic, Atlanta.

Other serious problems from the physicians’ point of view included patients’ lack of understanding about their disease, their attitudes about epilepsy and its treatment, and their educational level.

Patients cited memory issues as a large problem. These can interfere with discussions about the nature of their disorder, keeping appointments, and even remembering to take antiepileptic drugs.

For patients, cost was second to transportation difficulties, but only slightly so. Open-ended questions elicited some details in this area:

• "I have health insurance, but it still costs a fortune to take medication and pay the copays. It’s like you’re only allowed to be healthy if you’re rich."

• "It’s mostly the expense of the drugs. I am a single parent, and it’s very tough to afford the drugs I have to have to function."

• "With high-deductible insurance, my [drug] costs me $600 per month."

• "My client has no money for appointments or medicine. The free clinic has him saturated on seizure meds and pain pills ... There is no quality of providers at the free clinics."

Memory impairment, caused by both the disorder and its treatment, was a large impediment to quality care:

• "I have memory loss due to a left temporal lobectomy ... and the surgery resulted in affecting my memory storage and retrieval."

• "After a big seizure, my memory is shot. ... I’m scared to go anywhere because I’m scared I will have another one."

• "I have kids, and it’s hard to remember to take the meds and follow instructions to the exact orders of the doctor."

Dr. Helmers pointed out some differences in responses between the two groups, which she said highlight the topic of health literacy and physicians’ abilities to fully explain the disease in a comprehensible manner. "This raises issues about our ability to educate patients ... in a culturally sensitive, understandable way," with special attention given to patients with memory issues.

Patients sometimes feared their treatment and mistrusted their neurologist – problems Dr. Helmers said may be related to poor doctor-patient communication. Some answers to open-ended questions highlighted this breakdown in communication:

• "I find it very upsetting to be constantly told to try this drug and that drug. I feel like a lab rat. ... I cry at my doctor’s visits and all they do is tell me to go to a psychiatrist. But that doesn’t work unless the neurologist and the psychiatrist work together in my treatment, especially since some of the psychiatric medications lower my seizure threshold."

• "I feel like my neurologist doesn’t care about me ... just making the money."

• "I feel that as a functioning epileptic, my voice is seldom heard. I am often not understood by my neurologist. I don’t like to see him, because I feel he doesn’t understand me or the life I lead. He does not understand that my epilepsy may influence me, but it does not define me."

With a limited number of physicians skilled in epilepsy management, patients will continue to express frustration with access to care, Dr. Helmers said. "Access to neurologists and epileptologists is being restricted, and this is probably going to get worse," she said. "This means that more and more primary care providers are going to be caring for these patients."

These data also were recently reported at an Institute of Medicine meeting in the hope that they would spur more research about barriers to epilepsy care, she said. "I think this will give us some direction for future research. The surveys show that we have a huge amount of room to improve the quality of care in epilepsy. We have to address the issues, but the question is – how?"

Dr. Helmers said she had no relevant financial disclosures.

BALTIMORE – People with epilepsy – and their physicians – report that they continue to encounter barriers to optimal care, according to Dr. Sandra Helmers.

Underinsurance and a lack of insurance are among the biggest concerns for both parties. But other factors play into the equation as well, she said at the annual meeting of the American Epilepsy Society.

She and her colleagues created two surveys to identify barriers to access and treatment from the perspective of both patients and physicians. A total of 63 physicians and about 700 patients responded to the surveys, which were posted on the websites of the Epilepsy Foundation and the American Epilepsy Society.

Physicians cited health insurance and transportation issues as the biggest impediments to optimal care. Patients also expressed concern about these; they reported transportation difficulties to be the top barrier to making appointments, said Dr. Helmers, director of the adult electroencephalography laboratory at Emory University Hospital and Clinic, Atlanta.

Other serious problems from the physicians’ point of view included patients’ lack of understanding about their disease, their attitudes about epilepsy and its treatment, and their educational level.

Patients cited memory issues as a large problem. These can interfere with discussions about the nature of their disorder, keeping appointments, and even remembering to take antiepileptic drugs.

For patients, cost was second to transportation difficulties, but only slightly so. Open-ended questions elicited some details in this area:

• "I have health insurance, but it still costs a fortune to take medication and pay the copays. It’s like you’re only allowed to be healthy if you’re rich."

• "It’s mostly the expense of the drugs. I am a single parent, and it’s very tough to afford the drugs I have to have to function."

• "With high-deductible insurance, my [drug] costs me $600 per month."

• "My client has no money for appointments or medicine. The free clinic has him saturated on seizure meds and pain pills ... There is no quality of providers at the free clinics."

Memory impairment, caused by both the disorder and its treatment, was a large impediment to quality care:

• "I have memory loss due to a left temporal lobectomy ... and the surgery resulted in affecting my memory storage and retrieval."

• "After a big seizure, my memory is shot. ... I’m scared to go anywhere because I’m scared I will have another one."

• "I have kids, and it’s hard to remember to take the meds and follow instructions to the exact orders of the doctor."

Dr. Helmers pointed out some differences in responses between the two groups, which she said highlight the topic of health literacy and physicians’ abilities to fully explain the disease in a comprehensible manner. "This raises issues about our ability to educate patients ... in a culturally sensitive, understandable way," with special attention given to patients with memory issues.

Patients sometimes feared their treatment and mistrusted their neurologist – problems Dr. Helmers said may be related to poor doctor-patient communication. Some answers to open-ended questions highlighted this breakdown in communication:

• "I find it very upsetting to be constantly told to try this drug and that drug. I feel like a lab rat. ... I cry at my doctor’s visits and all they do is tell me to go to a psychiatrist. But that doesn’t work unless the neurologist and the psychiatrist work together in my treatment, especially since some of the psychiatric medications lower my seizure threshold."

• "I feel like my neurologist doesn’t care about me ... just making the money."

• "I feel that as a functioning epileptic, my voice is seldom heard. I am often not understood by my neurologist. I don’t like to see him, because I feel he doesn’t understand me or the life I lead. He does not understand that my epilepsy may influence me, but it does not define me."

With a limited number of physicians skilled in epilepsy management, patients will continue to express frustration with access to care, Dr. Helmers said. "Access to neurologists and epileptologists is being restricted, and this is probably going to get worse," she said. "This means that more and more primary care providers are going to be caring for these patients."

These data also were recently reported at an Institute of Medicine meeting in the hope that they would spur more research about barriers to epilepsy care, she said. "I think this will give us some direction for future research. The surveys show that we have a huge amount of room to improve the quality of care in epilepsy. We have to address the issues, but the question is – how?"

Dr. Helmers said she had no relevant financial disclosures.

BALTIMORE – The use of hormonal contraception among women with epilepsy may significantly increase their rate of seizure activity, according to the findings of a Web-based survey of women aged 18 to 47 years with the neurological condition.

Seizures while using contraceptives were reported by 18% of women using hormonal contraceptives, compared with 3% of those using nonhormonal contraceptives, according to the study’s lead investigator Kristen M. Fowler, R.N., of Beth Israel Deaconess Medical Center, Boston.

When antiepileptic drugs (AEDs) were not used, 24% of women using hormonal contraceptives reported an increase in seizure frequency, compared with 7% of women using nonhormonal contraceptives.

Seizure exacerbation with hormonal contraceptives differed among the AEDs used, Ms. Fowler said at the annual meeting of the American Epilepsy Society, where she presented her findings from the first 300 women who responded to a Web-based survey, called the Epilepsy Birth Control Registry.

Valproate showed the greatest seizure exacerbation when used in conjunction with hormonal contraceptives. Seizure exacerbation while taking valproate occurred in 44% of women using hormonal contraceptives, compared with 8% of women who were using nonhormonal contraceptives.

In general, glucuronidated AEDs and enzyme-inducing AEDs were associated with significantly greater seizure exacerbation than nonenzyme-inducing AEDs, especially when women were using hormonal contraception, Ms. Fowler found.

In a related analysis that looked more broadly at contraceptive choices among the same group of surveyed women, 72% of the women reported using contraception. Among those women, the most common choices were oral contraceptives (23%), male condoms (23%), intrauterine devices (12%), and withdrawal (10%).

"Although contraception is an important consideration for women of reproductive age, there has been little investigation of contraceptive practices in women with epilepsy," said Kaitlyn Cahill, also at Beth Israel Deaconess Medical Center.

The top three considerations when making contraceptive choices were AED interaction (57%), efficacy (53%), and convenience (45%). Only about 3% of the women mentioned cost as a most important consideration in choosing contraception.

A subgroup of 178 women was considered high risk because they were potentially fertile and sexually active. Of these women, 68% used highly effective contraceptive methods: 44% used hormonal contraception, 16% used IUDs, and 8% relied on a tubal ligation or vasectomy.

Hormonal contraception varied according to insurance coverage status (53% with insurance used it vs. 29% without).

Only 28% of the women reported consulting their neurologist before selecting a contraceptive method.

The retrospective design of both studies limited the conclusion that could be drawn. "Prospective investigations are needed to determine whether these findings represent important seizure safety issues or reporting biases," they concluded.

The studies were supported in part by the Epilepsy Foundation. The researchers had no financial conflicts to disclose.

BALTIMORE – The use of hormonal contraception among women with epilepsy may significantly increase their rate of seizure activity, according to the findings of a Web-based survey of women aged 18 to 47 years with the neurological condition.

Seizures while using contraceptives were reported by 18% of women using hormonal contraceptives, compared with 3% of those using nonhormonal contraceptives, according to the study’s lead investigator Kristen M. Fowler, R.N., of Beth Israel Deaconess Medical Center, Boston.

When antiepileptic drugs (AEDs) were not used, 24% of women using hormonal contraceptives reported an increase in seizure frequency, compared with 7% of women using nonhormonal contraceptives.

Seizure exacerbation with hormonal contraceptives differed among the AEDs used, Ms. Fowler said at the annual meeting of the American Epilepsy Society, where she presented her findings from the first 300 women who responded to a Web-based survey, called the Epilepsy Birth Control Registry.

Valproate showed the greatest seizure exacerbation when used in conjunction with hormonal contraceptives. Seizure exacerbation while taking valproate occurred in 44% of women using hormonal contraceptives, compared with 8% of women who were using nonhormonal contraceptives.

In general, glucuronidated AEDs and enzyme-inducing AEDs were associated with significantly greater seizure exacerbation than nonenzyme-inducing AEDs, especially when women were using hormonal contraception, Ms. Fowler found.

In a related analysis that looked more broadly at contraceptive choices among the same group of surveyed women, 72% of the women reported using contraception. Among those women, the most common choices were oral contraceptives (23%), male condoms (23%), intrauterine devices (12%), and withdrawal (10%).

"Although contraception is an important consideration for women of reproductive age, there has been little investigation of contraceptive practices in women with epilepsy," said Kaitlyn Cahill, also at Beth Israel Deaconess Medical Center.

The top three considerations when making contraceptive choices were AED interaction (57%), efficacy (53%), and convenience (45%). Only about 3% of the women mentioned cost as a most important consideration in choosing contraception.

A subgroup of 178 women was considered high risk because they were potentially fertile and sexually active. Of these women, 68% used highly effective contraceptive methods: 44% used hormonal contraception, 16% used IUDs, and 8% relied on a tubal ligation or vasectomy.

Hormonal contraception varied according to insurance coverage status (53% with insurance used it vs. 29% without).

Only 28% of the women reported consulting their neurologist before selecting a contraceptive method.

The retrospective design of both studies limited the conclusion that could be drawn. "Prospective investigations are needed to determine whether these findings represent important seizure safety issues or reporting biases," they concluded.

The studies were supported in part by the Epilepsy Foundation. The researchers had no financial conflicts to disclose.

BALTIMORE – The use of hormonal contraception among women with epilepsy may significantly increase their rate of seizure activity, according to the findings of a Web-based survey of women aged 18 to 47 years with the neurological condition.

Seizures while using contraceptives were reported by 18% of women using hormonal contraceptives, compared with 3% of those using nonhormonal contraceptives, according to the study’s lead investigator Kristen M. Fowler, R.N., of Beth Israel Deaconess Medical Center, Boston.

When antiepileptic drugs (AEDs) were not used, 24% of women using hormonal contraceptives reported an increase in seizure frequency, compared with 7% of women using nonhormonal contraceptives.

Seizure exacerbation with hormonal contraceptives differed among the AEDs used, Ms. Fowler said at the annual meeting of the American Epilepsy Society, where she presented her findings from the first 300 women who responded to a Web-based survey, called the Epilepsy Birth Control Registry.

Valproate showed the greatest seizure exacerbation when used in conjunction with hormonal contraceptives. Seizure exacerbation while taking valproate occurred in 44% of women using hormonal contraceptives, compared with 8% of women who were using nonhormonal contraceptives.

In general, glucuronidated AEDs and enzyme-inducing AEDs were associated with significantly greater seizure exacerbation than nonenzyme-inducing AEDs, especially when women were using hormonal contraception, Ms. Fowler found.

In a related analysis that looked more broadly at contraceptive choices among the same group of surveyed women, 72% of the women reported using contraception. Among those women, the most common choices were oral contraceptives (23%), male condoms (23%), intrauterine devices (12%), and withdrawal (10%).

"Although contraception is an important consideration for women of reproductive age, there has been little investigation of contraceptive practices in women with epilepsy," said Kaitlyn Cahill, also at Beth Israel Deaconess Medical Center.

The top three considerations when making contraceptive choices were AED interaction (57%), efficacy (53%), and convenience (45%). Only about 3% of the women mentioned cost as a most important consideration in choosing contraception.

A subgroup of 178 women was considered high risk because they were potentially fertile and sexually active. Of these women, 68% used highly effective contraceptive methods: 44% used hormonal contraception, 16% used IUDs, and 8% relied on a tubal ligation or vasectomy.

Hormonal contraception varied according to insurance coverage status (53% with insurance used it vs. 29% without).

Only 28% of the women reported consulting their neurologist before selecting a contraceptive method.

The retrospective design of both studies limited the conclusion that could be drawn. "Prospective investigations are needed to determine whether these findings represent important seizure safety issues or reporting biases," they concluded.

The studies were supported in part by the Epilepsy Foundation. The researchers had no financial conflicts to disclose.

BALTIMORE – Children with complex partial seizures more often had long-term social, psychiatric, and school challenges and worse seizure outcomes than did children with only secondarily generalized seizures in a subanalysis of patients in a population-based cohort study.

"At least 50% of those with complex partial seizures have difficult-to-control seizures without remission, and up to 70% have poor social and school success and significant psychiatric and social comorbidity," Dr. Carol Camfield said at the annual meeting of the American Epilepsy Society. "This [seizure type] should be a red flag to get these children intensive medical and social interventions."

The majority of otherwise normal children with epilepsy have complex partial seizures, or focal seizures with secondary generalization, said Dr. Camfield, professor of pediatrics at Dalhousie University Medical School in Halifax, N.S. "Typically they don’t have a specific epilepsy syndrome at the time of diagnosis, and the overall remission rates are high in those with normal intelligence." However, she said, only a few studies have examined the long-term social and psychological outcomes of these two specific seizure types.

Dr. Camfield attempted to do that by drawing on a subset of patients in the population-based Nova Scotia Childhood Epilepsy Study. The study includes 692 adults who were diagnosed with epilepsy during 1977-1985. Some of the patients now have more than 30 years of follow-up data.

Dr. Camfield’s subanalysis of the study included 57 patients with focal epilepsy who had secondary generalized seizures and 88 who had partial complex seizures with or without secondary generalization. The patients had onset of epilepsy at an average age of 7 years and were followed for an average of nearly 28 years. All had normal intelligence and normal neurologic exams at the last follow-up visit.

Overall, patients with only secondary generalization (SecGen) had significantly better long-term physical and psychosocial health than did those with partial complex seizures (PCS), Dr. Camfield said.

SecGen patients had significantly better seizure outcome than did PCS patients. Most of the SecGen patients (97%) had at least one 5-year seizure-free period, compared with 64% of the PCS patients. This was highly statistically significant, with a P value of .00005. "We have never seen P values like this in any of our studies [on this group]," she noted.

While most patients in both groups were seizure free at the last follow-up, the rate was significantly higher in the SecGen group than in the PCS group (98% vs. 68%). Likewise, terminal remission – defined as being seizure free and off all antiepileptic drugs – was significantly more common among the SecGen group (82% vs. 44%).

"This [seizure type] should be a red flag to get these children intensive medical and social interventions."

The SecGen group also was significantly less likely to have intractable epilepsy and to have undergone epilepsy surgery, or either alone (5% vs. 38%).

The group with PCS also had significantly worse psychosocial outcomes than did the SecGen group. Although all had normal intelligence, 44% of the PCS group had a diagnosed learning disorder, 55% had repeated a grade in school, and 90% had undergone neuropsychological testing, either at the medical center or in the school system.

Significantly more of the PCS patients had visited a psychiatrist or psychologist, and had a diagnosed psychiatric disorder (64% vs. 26%).

"Marriage is also considered a good outcome," Dr. Camfield said. "In the SecGen group, 44% were married by age 34, significantly more than 27% of the PCS group."

"If otherwise normal children with a focal epilepsy have complex partial seizures, their progress over the next 25 years is ominous, compared with the relatively carefree outlook for those with secondary generalized seizures only," she said.

Dr. Camfield had no financial disclosures.

BALTIMORE – Children with complex partial seizures more often had long-term social, psychiatric, and school challenges and worse seizure outcomes than did children with only secondarily generalized seizures in a subanalysis of patients in a population-based cohort study.

"At least 50% of those with complex partial seizures have difficult-to-control seizures without remission, and up to 70% have poor social and school success and significant psychiatric and social comorbidity," Dr. Carol Camfield said at the annual meeting of the American Epilepsy Society. "This [seizure type] should be a red flag to get these children intensive medical and social interventions."

The majority of otherwise normal children with epilepsy have complex partial seizures, or focal seizures with secondary generalization, said Dr. Camfield, professor of pediatrics at Dalhousie University Medical School in Halifax, N.S. "Typically they don’t have a specific epilepsy syndrome at the time of diagnosis, and the overall remission rates are high in those with normal intelligence." However, she said, only a few studies have examined the long-term social and psychological outcomes of these two specific seizure types.

Dr. Camfield attempted to do that by drawing on a subset of patients in the population-based Nova Scotia Childhood Epilepsy Study. The study includes 692 adults who were diagnosed with epilepsy during 1977-1985. Some of the patients now have more than 30 years of follow-up data.

Dr. Camfield’s subanalysis of the study included 57 patients with focal epilepsy who had secondary generalized seizures and 88 who had partial complex seizures with or without secondary generalization. The patients had onset of epilepsy at an average age of 7 years and were followed for an average of nearly 28 years. All had normal intelligence and normal neurologic exams at the last follow-up visit.

Overall, patients with only secondary generalization (SecGen) had significantly better long-term physical and psychosocial health than did those with partial complex seizures (PCS), Dr. Camfield said.

SecGen patients had significantly better seizure outcome than did PCS patients. Most of the SecGen patients (97%) had at least one 5-year seizure-free period, compared with 64% of the PCS patients. This was highly statistically significant, with a P value of .00005. "We have never seen P values like this in any of our studies [on this group]," she noted.

While most patients in both groups were seizure free at the last follow-up, the rate was significantly higher in the SecGen group than in the PCS group (98% vs. 68%). Likewise, terminal remission – defined as being seizure free and off all antiepileptic drugs – was significantly more common among the SecGen group (82% vs. 44%).

"This [seizure type] should be a red flag to get these children intensive medical and social interventions."

The SecGen group also was significantly less likely to have intractable epilepsy and to have undergone epilepsy surgery, or either alone (5% vs. 38%).

The group with PCS also had significantly worse psychosocial outcomes than did the SecGen group. Although all had normal intelligence, 44% of the PCS group had a diagnosed learning disorder, 55% had repeated a grade in school, and 90% had undergone neuropsychological testing, either at the medical center or in the school system.

Significantly more of the PCS patients had visited a psychiatrist or psychologist, and had a diagnosed psychiatric disorder (64% vs. 26%).

"Marriage is also considered a good outcome," Dr. Camfield said. "In the SecGen group, 44% were married by age 34, significantly more than 27% of the PCS group."

"If otherwise normal children with a focal epilepsy have complex partial seizures, their progress over the next 25 years is ominous, compared with the relatively carefree outlook for those with secondary generalized seizures only," she said.

Dr. Camfield had no financial disclosures.

BALTIMORE – Children with complex partial seizures more often had long-term social, psychiatric, and school challenges and worse seizure outcomes than did children with only secondarily generalized seizures in a subanalysis of patients in a population-based cohort study.

"At least 50% of those with complex partial seizures have difficult-to-control seizures without remission, and up to 70% have poor social and school success and significant psychiatric and social comorbidity," Dr. Carol Camfield said at the annual meeting of the American Epilepsy Society. "This [seizure type] should be a red flag to get these children intensive medical and social interventions."

The majority of otherwise normal children with epilepsy have complex partial seizures, or focal seizures with secondary generalization, said Dr. Camfield, professor of pediatrics at Dalhousie University Medical School in Halifax, N.S. "Typically they don’t have a specific epilepsy syndrome at the time of diagnosis, and the overall remission rates are high in those with normal intelligence." However, she said, only a few studies have examined the long-term social and psychological outcomes of these two specific seizure types.

Dr. Camfield attempted to do that by drawing on a subset of patients in the population-based Nova Scotia Childhood Epilepsy Study. The study includes 692 adults who were diagnosed with epilepsy during 1977-1985. Some of the patients now have more than 30 years of follow-up data.

Dr. Camfield’s subanalysis of the study included 57 patients with focal epilepsy who had secondary generalized seizures and 88 who had partial complex seizures with or without secondary generalization. The patients had onset of epilepsy at an average age of 7 years and were followed for an average of nearly 28 years. All had normal intelligence and normal neurologic exams at the last follow-up visit.

Overall, patients with only secondary generalization (SecGen) had significantly better long-term physical and psychosocial health than did those with partial complex seizures (PCS), Dr. Camfield said.

SecGen patients had significantly better seizure outcome than did PCS patients. Most of the SecGen patients (97%) had at least one 5-year seizure-free period, compared with 64% of the PCS patients. This was highly statistically significant, with a P value of .00005. "We have never seen P values like this in any of our studies [on this group]," she noted.

While most patients in both groups were seizure free at the last follow-up, the rate was significantly higher in the SecGen group than in the PCS group (98% vs. 68%). Likewise, terminal remission – defined as being seizure free and off all antiepileptic drugs – was significantly more common among the SecGen group (82% vs. 44%).

"This [seizure type] should be a red flag to get these children intensive medical and social interventions."

The SecGen group also was significantly less likely to have intractable epilepsy and to have undergone epilepsy surgery, or either alone (5% vs. 38%).

The group with PCS also had significantly worse psychosocial outcomes than did the SecGen group. Although all had normal intelligence, 44% of the PCS group had a diagnosed learning disorder, 55% had repeated a grade in school, and 90% had undergone neuropsychological testing, either at the medical center or in the school system.

Significantly more of the PCS patients had visited a psychiatrist or psychologist, and had a diagnosed psychiatric disorder (64% vs. 26%).

"Marriage is also considered a good outcome," Dr. Camfield said. "In the SecGen group, 44% were married by age 34, significantly more than 27% of the PCS group."

"If otherwise normal children with a focal epilepsy have complex partial seizures, their progress over the next 25 years is ominous, compared with the relatively carefree outlook for those with secondary generalized seizures only," she said.

Dr. Camfield had no financial disclosures.

BALTIMORE – All young children with epilepsy should also undergo screening for autism spectrum disorders and developmental delay, a study has shown.

In a pair of pediatric epilepsy units, 77% of children screened positive for development delay, and 36% screened positive for autism. About one-third of those children were previously undiagnosed.

Because the conditions often occur concurrently, a screening of children 5 years and younger can make a life-changing difference, Anne Berg, Ph.D., said at the annual meeting of the American Epilepsy Society.

"Our hope is that we can begin catching these problems earlier to get beneficial interventions in place, which, hopefully, will lead to better long-term outcomes for these children," she said at a press briefing.

Dr Berg of Children’s Memorial Hospital, Chicago, said that allied health professionals are well positioned to take charge of a screening program, leaving physicians free to concentrate on the children’s medical needs.

"We suspect that pediatricians are following the American Academy of Pediatrics guidelines and getting these children to neurologists, but once the children arrive, the pediatricians think the neurologist will do the screening," Dr. Berg noted. However, "the neurologist assumes the pediatrician has done the screening. Other professionals, like nurse practitioners and child development specialists, can help to fill in that gap."

Pediatric nurse practitioners Catherine Dezort and Breanne Fisher, also of Children’s Memorial, undertook the study along with Dr Berg. They examined developmental status in 44 children with epilepsy who were seen at the hospital’s ketogenic diet clinic or EEG monitoring unit.

All of the children were younger than 5 years; the mean age was 31 months. Most (32) were established patients, and the remainder were new-onset epilepsy patients who had the screening done as part of their first epilepsy unit visit. The patients were divided equally between boys and girls.

Parents were asked to complete the Ages and Stages Questionnaires, a developmental assessment, and the Modified Checklist for Autism in Toddlers. "We were struck by the number of young children with cognitive, behavioral, and social deficits [along with epilepsy] in these units," Ms. Dezort said.

Of the 34 children with a positive developmental screen, 26 had delay in at least one area of communication, 28 had a gross motor delay, and 31 had a fine motor delay. A problem-solving or personal-social delay was seen in 25 children.

Sixteen also screened positive for an autism spectrum disorder. "However, 12 of these scored positive for autism because of their underlying developmental status," Ms. Fisher said. Only four were actually referred for further autism evaluation.

"Autism screening should be interpreted carefully, keeping in mind the child’s underlying neurological status," she added, because some children display autisticlike behaviors that are actually related to a seizure disorder.

Autism occurred concurrently with at least one type of delay; no children screened positive for autism alone.

The researchers also found that 38% of established patents and 33% of the new patients with either positive screen were not getting adequate – or, in some cases, any – supportive services, Ms. Fisher said.

"We made referrals for further evaluations, and now all of them are getting services," she said. Referrals included physical therapy; speech therapy; occupational therapy; psychiatric services – including psychiatrists, psychologists, and social workers – or an educational specialist.

The study provides a workable model for early identification and intervention, Ms. Dezort said.

"We would recommend that everyone up to 18 years old [with an epilepsy diagnosis] be screened and treated," she said. "In fact, we’re now screening all of our new patients for behavioral, cognitive, and psychiatric comorbidities, and we’re looking at ways to increase screening in all of our epilepsy patients, not just those who come to our clinics.

"We think screening is an excellent role for allied health professionals and an excellent, easily adaptable model for other settings," Ms. Dezort added.

None of the investigators reported any relevant financial disclosures.

BALTIMORE – All young children with epilepsy should also undergo screening for autism spectrum disorders and developmental delay, a study has shown.

In a pair of pediatric epilepsy units, 77% of children screened positive for development delay, and 36% screened positive for autism. About one-third of those children were previously undiagnosed.

Because the conditions often occur concurrently, a screening of children 5 years and younger can make a life-changing difference, Anne Berg, Ph.D., said at the annual meeting of the American Epilepsy Society.

"Our hope is that we can begin catching these problems earlier to get beneficial interventions in place, which, hopefully, will lead to better long-term outcomes for these children," she said at a press briefing.

Dr Berg of Children’s Memorial Hospital, Chicago, said that allied health professionals are well positioned to take charge of a screening program, leaving physicians free to concentrate on the children’s medical needs.

"We suspect that pediatricians are following the American Academy of Pediatrics guidelines and getting these children to neurologists, but once the children arrive, the pediatricians think the neurologist will do the screening," Dr. Berg noted. However, "the neurologist assumes the pediatrician has done the screening. Other professionals, like nurse practitioners and child development specialists, can help to fill in that gap."

Pediatric nurse practitioners Catherine Dezort and Breanne Fisher, also of Children’s Memorial, undertook the study along with Dr Berg. They examined developmental status in 44 children with epilepsy who were seen at the hospital’s ketogenic diet clinic or EEG monitoring unit.

All of the children were younger than 5 years; the mean age was 31 months. Most (32) were established patients, and the remainder were new-onset epilepsy patients who had the screening done as part of their first epilepsy unit visit. The patients were divided equally between boys and girls.

Parents were asked to complete the Ages and Stages Questionnaires, a developmental assessment, and the Modified Checklist for Autism in Toddlers. "We were struck by the number of young children with cognitive, behavioral, and social deficits [along with epilepsy] in these units," Ms. Dezort said.

Of the 34 children with a positive developmental screen, 26 had delay in at least one area of communication, 28 had a gross motor delay, and 31 had a fine motor delay. A problem-solving or personal-social delay was seen in 25 children.

Sixteen also screened positive for an autism spectrum disorder. "However, 12 of these scored positive for autism because of their underlying developmental status," Ms. Fisher said. Only four were actually referred for further autism evaluation.

"Autism screening should be interpreted carefully, keeping in mind the child’s underlying neurological status," she added, because some children display autisticlike behaviors that are actually related to a seizure disorder.

Autism occurred concurrently with at least one type of delay; no children screened positive for autism alone.

The researchers also found that 38% of established patents and 33% of the new patients with either positive screen were not getting adequate – or, in some cases, any – supportive services, Ms. Fisher said.

"We made referrals for further evaluations, and now all of them are getting services," she said. Referrals included physical therapy; speech therapy; occupational therapy; psychiatric services – including psychiatrists, psychologists, and social workers – or an educational specialist.

The study provides a workable model for early identification and intervention, Ms. Dezort said.

"We would recommend that everyone up to 18 years old [with an epilepsy diagnosis] be screened and treated," she said. "In fact, we’re now screening all of our new patients for behavioral, cognitive, and psychiatric comorbidities, and we’re looking at ways to increase screening in all of our epilepsy patients, not just those who come to our clinics.

"We think screening is an excellent role for allied health professionals and an excellent, easily adaptable model for other settings," Ms. Dezort added.

None of the investigators reported any relevant financial disclosures.

BALTIMORE – All young children with epilepsy should also undergo screening for autism spectrum disorders and developmental delay, a study has shown.

In a pair of pediatric epilepsy units, 77% of children screened positive for development delay, and 36% screened positive for autism. About one-third of those children were previously undiagnosed.

Because the conditions often occur concurrently, a screening of children 5 years and younger can make a life-changing difference, Anne Berg, Ph.D., said at the annual meeting of the American Epilepsy Society.

"Our hope is that we can begin catching these problems earlier to get beneficial interventions in place, which, hopefully, will lead to better long-term outcomes for these children," she said at a press briefing.

Dr Berg of Children’s Memorial Hospital, Chicago, said that allied health professionals are well positioned to take charge of a screening program, leaving physicians free to concentrate on the children’s medical needs.

"We suspect that pediatricians are following the American Academy of Pediatrics guidelines and getting these children to neurologists, but once the children arrive, the pediatricians think the neurologist will do the screening," Dr. Berg noted. However, "the neurologist assumes the pediatrician has done the screening. Other professionals, like nurse practitioners and child development specialists, can help to fill in that gap."

Pediatric nurse practitioners Catherine Dezort and Breanne Fisher, also of Children’s Memorial, undertook the study along with Dr Berg. They examined developmental status in 44 children with epilepsy who were seen at the hospital’s ketogenic diet clinic or EEG monitoring unit.

All of the children were younger than 5 years; the mean age was 31 months. Most (32) were established patients, and the remainder were new-onset epilepsy patients who had the screening done as part of their first epilepsy unit visit. The patients were divided equally between boys and girls.

Parents were asked to complete the Ages and Stages Questionnaires, a developmental assessment, and the Modified Checklist for Autism in Toddlers. "We were struck by the number of young children with cognitive, behavioral, and social deficits [along with epilepsy] in these units," Ms. Dezort said.

Of the 34 children with a positive developmental screen, 26 had delay in at least one area of communication, 28 had a gross motor delay, and 31 had a fine motor delay. A problem-solving or personal-social delay was seen in 25 children.

Sixteen also screened positive for an autism spectrum disorder. "However, 12 of these scored positive for autism because of their underlying developmental status," Ms. Fisher said. Only four were actually referred for further autism evaluation.

"Autism screening should be interpreted carefully, keeping in mind the child’s underlying neurological status," she added, because some children display autisticlike behaviors that are actually related to a seizure disorder.

Autism occurred concurrently with at least one type of delay; no children screened positive for autism alone.

The researchers also found that 38% of established patents and 33% of the new patients with either positive screen were not getting adequate – or, in some cases, any – supportive services, Ms. Fisher said.

"We made referrals for further evaluations, and now all of them are getting services," she said. Referrals included physical therapy; speech therapy; occupational therapy; psychiatric services – including psychiatrists, psychologists, and social workers – or an educational specialist.

The study provides a workable model for early identification and intervention, Ms. Dezort said.

"We would recommend that everyone up to 18 years old [with an epilepsy diagnosis] be screened and treated," she said. "In fact, we’re now screening all of our new patients for behavioral, cognitive, and psychiatric comorbidities, and we’re looking at ways to increase screening in all of our epilepsy patients, not just those who come to our clinics.

"We think screening is an excellent role for allied health professionals and an excellent, easily adaptable model for other settings," Ms. Dezort added.

None of the investigators reported any relevant financial disclosures.

BALTIMORE – In utero exposure to valproate appears to increase the risk of significant adverse effects on fetal brain development that persist into childhood.

In two separate studies, children whose mothers took valproate during pregnancy had a higher risk for lower IQ and other cognitive deficiencies, as well as autism and other disorders along the autistic spectrum. "All women with epilepsy of childbearing potential should be informed of the risks. I feel that valproate should not be a first choice antiepileptic drug in women of childbearing potential," Dr. Kimford J. Meador, director of the Emory Epilepsy Center and professor of neurology at Emory University, Atlanta, said in an interview.

The cognition data come from the NEAD (Neurodevelopmental Effects of Antiepileptic Drugs) study, a prospective observational study that enrolled pregnant women who were using any of several antiepileptic-drug monotherapies from October 1999 through February 2004 in 25 epilepsy centers in the United States and the United Kingdom. Dr. Meador and his colleagues previously published interim NEAD data showing impaired cognitive function in 309 offspring at 3 years of age (N. Engl. J. Med. 2009;360:1597-1605).

In June 2011, the Food and Drug Administration issued a safety alert about the increased risk of impaired cognitive development in children exposed to valproate products in utero.

The investigators have now followed the children in the NEAD study up to 6 years of age. The primary study outcome is IQ at age 6 years as measured by the Differential Ability Scales (DAS), and a second analysis measures verbal and nonverbal cluster scores from the DAS.

In a multivariate analysis of the intent-to-treat sample of 310 children, IQ was lower among children exposed in utero to valproate, compared with children of mothers who took other antiepileptic drugs (AEDs) during pregnancy. Adjusted mean IQs were 105 for carbamazepine, 108 for lamotrigine, and 106 for phenytoin, compared with 99 in the children of mothers who took valproate. The difference between valproate and each of the other three medication groups was significant (P = .002, compared with all three groups combined).

Overall, maternal IQ was also strongly associated with their children’s IQ at 6 years (P less than .001), and both lower maternal age and lower gestational age were associated with lower IQ in the child. (P = .04 and .03, respectively). However, maternal IQ was not associated with child IQ among the offspring of mothers who took valproate, whereas it was strongly associated with child IQ for the other three AEDs, Dr. Meador reported.

The verbal cluster score was less than the nonverbal cluster score across all AEDs combined (P less than .0001) and for carbamazepine (P less than .028), lamotrigine (P less than .003), and valproate (P less than .005) individually, he said.

The autism findings were from a population-based cohort study of 655,691 children born between 1996 and 2006 to 428,431 mothers who were identified from the Danish Civil Registration System, a nationwide registry in Denmark. Information on AED prescriptions filled 30 days prior to and during pregnancy was obtained from the Danish National Prescription Registry, and children diagnosed with autism spectrum disorder and childhood autism were identified from the Danish Psychiatric Register, said Dr. Jakob Christensen of the department of neurology at Aarhus (Denmark) University Hospital.

The relative risk of autism spectrum disorder following valproate exposure during pregnancy was more than doubled (2.6), compared with children who were not exposed to antiepileptic medication during pregnancy. The relative risk of childhood autism was even higher, at 4.8. The relative risk of autism spectrum disorder was 2.6 following valproate monotherapy exposure and 2.5 following polytherapy that included valproate. The relative risk of childhood autism was 4.1 following valproate monotherapy and 6.8 following polytherapy that included valproate, Dr. Christensen reported at the meeting.

According to Dr. Meador, "There is a subgroup of women with primary generalized epilepsy who may only respond to valproate. I recommend trying the other AEDs first even in women with primary generalized epilepsy. If the woman is ultimately only controlled by valproate and decides to consider pregnancy, then the dose should be kept as low as possible."

The NEAD study was funded by the National Institute of Neurological Disorders and Stroke. Dr. Meador has worked as a consultant for the Epilepsy Study Consortium that receives money from NeuroPace, Upsher-Smith Laboratories, and Vivus Pharmaceuticals, but these funds are paid to Emory University and not to him directly. Fees for his consultant work for GlaxoSmithKline, Johnson & Johnson (Ortho McNeil), Medtronics, and UCB Pharma have gone to a charity of the company’s choice. In 2010, he received travel support from Sanofi-Aventis, a manufacturer of valproate. The Danish study was funded by the Danish Epilepsy Society. Dr. Christensen disclosed that he has received honoraria from UCB Pharma and Eisai.

BALTIMORE – In utero exposure to valproate appears to increase the risk of significant adverse effects on fetal brain development that persist into childhood.

In two separate studies, children whose mothers took valproate during pregnancy had a higher risk for lower IQ and other cognitive deficiencies, as well as autism and other disorders along the autistic spectrum. "All women with epilepsy of childbearing potential should be informed of the risks. I feel that valproate should not be a first choice antiepileptic drug in women of childbearing potential," Dr. Kimford J. Meador, director of the Emory Epilepsy Center and professor of neurology at Emory University, Atlanta, said in an interview.

The cognition data come from the NEAD (Neurodevelopmental Effects of Antiepileptic Drugs) study, a prospective observational study that enrolled pregnant women who were using any of several antiepileptic-drug monotherapies from October 1999 through February 2004 in 25 epilepsy centers in the United States and the United Kingdom. Dr. Meador and his colleagues previously published interim NEAD data showing impaired cognitive function in 309 offspring at 3 years of age (N. Engl. J. Med. 2009;360:1597-1605).

In June 2011, the Food and Drug Administration issued a safety alert about the increased risk of impaired cognitive development in children exposed to valproate products in utero.

The investigators have now followed the children in the NEAD study up to 6 years of age. The primary study outcome is IQ at age 6 years as measured by the Differential Ability Scales (DAS), and a second analysis measures verbal and nonverbal cluster scores from the DAS.

In a multivariate analysis of the intent-to-treat sample of 310 children, IQ was lower among children exposed in utero to valproate, compared with children of mothers who took other antiepileptic drugs (AEDs) during pregnancy. Adjusted mean IQs were 105 for carbamazepine, 108 for lamotrigine, and 106 for phenytoin, compared with 99 in the children of mothers who took valproate. The difference between valproate and each of the other three medication groups was significant (P = .002, compared with all three groups combined).

Overall, maternal IQ was also strongly associated with their children’s IQ at 6 years (P less than .001), and both lower maternal age and lower gestational age were associated with lower IQ in the child. (P = .04 and .03, respectively). However, maternal IQ was not associated with child IQ among the offspring of mothers who took valproate, whereas it was strongly associated with child IQ for the other three AEDs, Dr. Meador reported.

The verbal cluster score was less than the nonverbal cluster score across all AEDs combined (P less than .0001) and for carbamazepine (P less than .028), lamotrigine (P less than .003), and valproate (P less than .005) individually, he said.

The autism findings were from a population-based cohort study of 655,691 children born between 1996 and 2006 to 428,431 mothers who were identified from the Danish Civil Registration System, a nationwide registry in Denmark. Information on AED prescriptions filled 30 days prior to and during pregnancy was obtained from the Danish National Prescription Registry, and children diagnosed with autism spectrum disorder and childhood autism were identified from the Danish Psychiatric Register, said Dr. Jakob Christensen of the department of neurology at Aarhus (Denmark) University Hospital.

The relative risk of autism spectrum disorder following valproate exposure during pregnancy was more than doubled (2.6), compared with children who were not exposed to antiepileptic medication during pregnancy. The relative risk of childhood autism was even higher, at 4.8. The relative risk of autism spectrum disorder was 2.6 following valproate monotherapy exposure and 2.5 following polytherapy that included valproate. The relative risk of childhood autism was 4.1 following valproate monotherapy and 6.8 following polytherapy that included valproate, Dr. Christensen reported at the meeting.

According to Dr. Meador, "There is a subgroup of women with primary generalized epilepsy who may only respond to valproate. I recommend trying the other AEDs first even in women with primary generalized epilepsy. If the woman is ultimately only controlled by valproate and decides to consider pregnancy, then the dose should be kept as low as possible."

The NEAD study was funded by the National Institute of Neurological Disorders and Stroke. Dr. Meador has worked as a consultant for the Epilepsy Study Consortium that receives money from NeuroPace, Upsher-Smith Laboratories, and Vivus Pharmaceuticals, but these funds are paid to Emory University and not to him directly. Fees for his consultant work for GlaxoSmithKline, Johnson & Johnson (Ortho McNeil), Medtronics, and UCB Pharma have gone to a charity of the company’s choice. In 2010, he received travel support from Sanofi-Aventis, a manufacturer of valproate. The Danish study was funded by the Danish Epilepsy Society. Dr. Christensen disclosed that he has received honoraria from UCB Pharma and Eisai.

BALTIMORE – In utero exposure to valproate appears to increase the risk of significant adverse effects on fetal brain development that persist into childhood.

In two separate studies, children whose mothers took valproate during pregnancy had a higher risk for lower IQ and other cognitive deficiencies, as well as autism and other disorders along the autistic spectrum. "All women with epilepsy of childbearing potential should be informed of the risks. I feel that valproate should not be a first choice antiepileptic drug in women of childbearing potential," Dr. Kimford J. Meador, director of the Emory Epilepsy Center and professor of neurology at Emory University, Atlanta, said in an interview.

The cognition data come from the NEAD (Neurodevelopmental Effects of Antiepileptic Drugs) study, a prospective observational study that enrolled pregnant women who were using any of several antiepileptic-drug monotherapies from October 1999 through February 2004 in 25 epilepsy centers in the United States and the United Kingdom. Dr. Meador and his colleagues previously published interim NEAD data showing impaired cognitive function in 309 offspring at 3 years of age (N. Engl. J. Med. 2009;360:1597-1605).

In June 2011, the Food and Drug Administration issued a safety alert about the increased risk of impaired cognitive development in children exposed to valproate products in utero.

The investigators have now followed the children in the NEAD study up to 6 years of age. The primary study outcome is IQ at age 6 years as measured by the Differential Ability Scales (DAS), and a second analysis measures verbal and nonverbal cluster scores from the DAS.

In a multivariate analysis of the intent-to-treat sample of 310 children, IQ was lower among children exposed in utero to valproate, compared with children of mothers who took other antiepileptic drugs (AEDs) during pregnancy. Adjusted mean IQs were 105 for carbamazepine, 108 for lamotrigine, and 106 for phenytoin, compared with 99 in the children of mothers who took valproate. The difference between valproate and each of the other three medication groups was significant (P = .002, compared with all three groups combined).

Overall, maternal IQ was also strongly associated with their children’s IQ at 6 years (P less than .001), and both lower maternal age and lower gestational age were associated with lower IQ in the child. (P = .04 and .03, respectively). However, maternal IQ was not associated with child IQ among the offspring of mothers who took valproate, whereas it was strongly associated with child IQ for the other three AEDs, Dr. Meador reported.

The verbal cluster score was less than the nonverbal cluster score across all AEDs combined (P less than .0001) and for carbamazepine (P less than .028), lamotrigine (P less than .003), and valproate (P less than .005) individually, he said.

The autism findings were from a population-based cohort study of 655,691 children born between 1996 and 2006 to 428,431 mothers who were identified from the Danish Civil Registration System, a nationwide registry in Denmark. Information on AED prescriptions filled 30 days prior to and during pregnancy was obtained from the Danish National Prescription Registry, and children diagnosed with autism spectrum disorder and childhood autism were identified from the Danish Psychiatric Register, said Dr. Jakob Christensen of the department of neurology at Aarhus (Denmark) University Hospital.

The relative risk of autism spectrum disorder following valproate exposure during pregnancy was more than doubled (2.6), compared with children who were not exposed to antiepileptic medication during pregnancy. The relative risk of childhood autism was even higher, at 4.8. The relative risk of autism spectrum disorder was 2.6 following valproate monotherapy exposure and 2.5 following polytherapy that included valproate. The relative risk of childhood autism was 4.1 following valproate monotherapy and 6.8 following polytherapy that included valproate, Dr. Christensen reported at the meeting.

According to Dr. Meador, "There is a subgroup of women with primary generalized epilepsy who may only respond to valproate. I recommend trying the other AEDs first even in women with primary generalized epilepsy. If the woman is ultimately only controlled by valproate and decides to consider pregnancy, then the dose should be kept as low as possible."

The NEAD study was funded by the National Institute of Neurological Disorders and Stroke. Dr. Meador has worked as a consultant for the Epilepsy Study Consortium that receives money from NeuroPace, Upsher-Smith Laboratories, and Vivus Pharmaceuticals, but these funds are paid to Emory University and not to him directly. Fees for his consultant work for GlaxoSmithKline, Johnson & Johnson (Ortho McNeil), Medtronics, and UCB Pharma have gone to a charity of the company’s choice. In 2010, he received travel support from Sanofi-Aventis, a manufacturer of valproate. The Danish study was funded by the Danish Epilepsy Society. Dr. Christensen disclosed that he has received honoraria from UCB Pharma and Eisai.

BALTIMORE – A novel implantable device has demonstrated potential for predicting seizure onset in a preliminary analysis of 15 adult patients with medically refractory complex partial seizures.

The ambulatory intracranial EEG (iEEG) device, NeuroVista’s Seizure Advisory System (SAS), consists of electrodes that are implanted between the skull and the brain surface that continuously record electrical activity. The electrodes are connected by wires to a data storage device implanted in the chest. Signals are transmitted wirelessly to an external handheld device that processes the data and transmits visual and audible signals to the patient. A blue light signifies a low likelihood of seizures, white indicates medium susceptibility, and red alerts to a high likelihood of impending seizure.

Courtesy NeuroVista Corporation

"This is something we’ve never been able to do before, to predict when a seizure might happen, which potentially gives the opportunity for patients to make themselves safe, or possibly even take an acute-acting medication long-term. The uncertainty of when a seizure might occur is the most disabling part of seizures for most people. So to be able to have this sort of warning, to be able to structure day-to-day activities around [seizures] potentially, will mean a lot to people being able to control their lives," said Dr. Mark Cook, chair of medicine and director of neurosciences at St. Vincent’s Hospital, Melbourne. Dr. Cook reported the results of the study at the annual meeting of the American Epilepsy Society.

The 15 study subjects were all 18 years and older, had disabling partial and/or secondarily generalized partial seizures, and had failed therapeutic treatment with a minimum of two antiepileptic drugs. They were implanted at one of three clinical centers in Australia: Austin Health, The Royal Melbourne Hospital, and St. Vincent’s Hospital. At baseline, the patients reported experiencing 2-12 disabling partial onset seizures per month. Following intracranial implantation of the device, iEEG was collected to configure a patient-specific algorithm that identified periods of low, moderate, and high seizure likelihood.

In the data collection phase of the study, the estimated performance for the high and low likelihood advisories had to be statistically superior to a time-matched chance predictor with P value of .05 or less, and the high likelihood advisory sensitivity could not be statistically inferior to 65%. Patients who met those criteria entered an Advisory Phase where their system was configured to provide visual and audible advisories that indicate seizure likelihood.

In some instances, seizure incidence as recorded by the device was dramatically different from what the patient had reported. In one patient who initially reported having 7 seizures per month, the SAS recorded 104 per month, based on data covering 70 days. Another patient who reported 6 seizures per month actually had 80 per month, based on 126 days of data. Other patients overestimated their seizures, with one patient who reported having 3 seizures per month experiencing just 0.6 seizures per month, based on 209 days of data.

"Some patients overestimate the number of their seizures they’re having, but the amount by which [others] underestimate their seizures is very dramatic, sometimes by a factor of 10," Dr. Cook commented.

In the data collection (training) phase of the study, the sensitivity of the red advisory among 11 patients who completed the phase ranged from 0.65 to 1.00, with 10 of those patients meeting the performance criteria for the seizure advisories. Among 6 patients who have completed the subsequent 4-month advisory (prospective) study phase, red advisory sensitivity ranged from 0.56 to 1.00. In both study phases, there were no seizures during the low advisory (100% negative predictive value). The other four patients are still in the data collection phase.

The safety profile is consistent with published literature for strip electrodes and subclavicular implants, he said.

NeuroVista is continuing to study the clinical utility of the SAS, a company spokesman said.

Dr. Cook stated that he had no financial disclosures. The study was funded by NeuroVista, and four of the coinvestigators are company employees.

BALTIMORE – A novel implantable device has demonstrated potential for predicting seizure onset in a preliminary analysis of 15 adult patients with medically refractory complex partial seizures.

The ambulatory intracranial EEG (iEEG) device, NeuroVista’s Seizure Advisory System (SAS), consists of electrodes that are implanted between the skull and the brain surface that continuously record electrical activity. The electrodes are connected by wires to a data storage device implanted in the chest. Signals are transmitted wirelessly to an external handheld device that processes the data and transmits visual and audible signals to the patient. A blue light signifies a low likelihood of seizures, white indicates medium susceptibility, and red alerts to a high likelihood of impending seizure.

Courtesy NeuroVista Corporation

"This is something we’ve never been able to do before, to predict when a seizure might happen, which potentially gives the opportunity for patients to make themselves safe, or possibly even take an acute-acting medication long-term. The uncertainty of when a seizure might occur is the most disabling part of seizures for most people. So to be able to have this sort of warning, to be able to structure day-to-day activities around [seizures] potentially, will mean a lot to people being able to control their lives," said Dr. Mark Cook, chair of medicine and director of neurosciences at St. Vincent’s Hospital, Melbourne. Dr. Cook reported the results of the study at the annual meeting of the American Epilepsy Society.

The 15 study subjects were all 18 years and older, had disabling partial and/or secondarily generalized partial seizures, and had failed therapeutic treatment with a minimum of two antiepileptic drugs. They were implanted at one of three clinical centers in Australia: Austin Health, The Royal Melbourne Hospital, and St. Vincent’s Hospital. At baseline, the patients reported experiencing 2-12 disabling partial onset seizures per month. Following intracranial implantation of the device, iEEG was collected to configure a patient-specific algorithm that identified periods of low, moderate, and high seizure likelihood.

In the data collection phase of the study, the estimated performance for the high and low likelihood advisories had to be statistically superior to a time-matched chance predictor with P value of .05 or less, and the high likelihood advisory sensitivity could not be statistically inferior to 65%. Patients who met those criteria entered an Advisory Phase where their system was configured to provide visual and audible advisories that indicate seizure likelihood.

In some instances, seizure incidence as recorded by the device was dramatically different from what the patient had reported. In one patient who initially reported having 7 seizures per month, the SAS recorded 104 per month, based on data covering 70 days. Another patient who reported 6 seizures per month actually had 80 per month, based on 126 days of data. Other patients overestimated their seizures, with one patient who reported having 3 seizures per month experiencing just 0.6 seizures per month, based on 209 days of data.

"Some patients overestimate the number of their seizures they’re having, but the amount by which [others] underestimate their seizures is very dramatic, sometimes by a factor of 10," Dr. Cook commented.

In the data collection (training) phase of the study, the sensitivity of the red advisory among 11 patients who completed the phase ranged from 0.65 to 1.00, with 10 of those patients meeting the performance criteria for the seizure advisories. Among 6 patients who have completed the subsequent 4-month advisory (prospective) study phase, red advisory sensitivity ranged from 0.56 to 1.00. In both study phases, there were no seizures during the low advisory (100% negative predictive value). The other four patients are still in the data collection phase.

The safety profile is consistent with published literature for strip electrodes and subclavicular implants, he said.

NeuroVista is continuing to study the clinical utility of the SAS, a company spokesman said.

Dr. Cook stated that he had no financial disclosures. The study was funded by NeuroVista, and four of the coinvestigators are company employees.

BALTIMORE – A novel implantable device has demonstrated potential for predicting seizure onset in a preliminary analysis of 15 adult patients with medically refractory complex partial seizures.

The ambulatory intracranial EEG (iEEG) device, NeuroVista’s Seizure Advisory System (SAS), consists of electrodes that are implanted between the skull and the brain surface that continuously record electrical activity. The electrodes are connected by wires to a data storage device implanted in the chest. Signals are transmitted wirelessly to an external handheld device that processes the data and transmits visual and audible signals to the patient. A blue light signifies a low likelihood of seizures, white indicates medium susceptibility, and red alerts to a high likelihood of impending seizure.

Courtesy NeuroVista Corporation

"This is something we’ve never been able to do before, to predict when a seizure might happen, which potentially gives the opportunity for patients to make themselves safe, or possibly even take an acute-acting medication long-term. The uncertainty of when a seizure might occur is the most disabling part of seizures for most people. So to be able to have this sort of warning, to be able to structure day-to-day activities around [seizures] potentially, will mean a lot to people being able to control their lives," said Dr. Mark Cook, chair of medicine and director of neurosciences at St. Vincent’s Hospital, Melbourne. Dr. Cook reported the results of the study at the annual meeting of the American Epilepsy Society.

The 15 study subjects were all 18 years and older, had disabling partial and/or secondarily generalized partial seizures, and had failed therapeutic treatment with a minimum of two antiepileptic drugs. They were implanted at one of three clinical centers in Australia: Austin Health, The Royal Melbourne Hospital, and St. Vincent’s Hospital. At baseline, the patients reported experiencing 2-12 disabling partial onset seizures per month. Following intracranial implantation of the device, iEEG was collected to configure a patient-specific algorithm that identified periods of low, moderate, and high seizure likelihood.

In the data collection phase of the study, the estimated performance for the high and low likelihood advisories had to be statistically superior to a time-matched chance predictor with P value of .05 or less, and the high likelihood advisory sensitivity could not be statistically inferior to 65%. Patients who met those criteria entered an Advisory Phase where their system was configured to provide visual and audible advisories that indicate seizure likelihood.

In some instances, seizure incidence as recorded by the device was dramatically different from what the patient had reported. In one patient who initially reported having 7 seizures per month, the SAS recorded 104 per month, based on data covering 70 days. Another patient who reported 6 seizures per month actually had 80 per month, based on 126 days of data. Other patients overestimated their seizures, with one patient who reported having 3 seizures per month experiencing just 0.6 seizures per month, based on 209 days of data.

"Some patients overestimate the number of their seizures they’re having, but the amount by which [others] underestimate their seizures is very dramatic, sometimes by a factor of 10," Dr. Cook commented.

In the data collection (training) phase of the study, the sensitivity of the red advisory among 11 patients who completed the phase ranged from 0.65 to 1.00, with 10 of those patients meeting the performance criteria for the seizure advisories. Among 6 patients who have completed the subsequent 4-month advisory (prospective) study phase, red advisory sensitivity ranged from 0.56 to 1.00. In both study phases, there were no seizures during the low advisory (100% negative predictive value). The other four patients are still in the data collection phase.

The safety profile is consistent with published literature for strip electrodes and subclavicular implants, he said.

NeuroVista is continuing to study the clinical utility of the SAS, a company spokesman said.

Dr. Cook stated that he had no financial disclosures. The study was funded by NeuroVista, and four of the coinvestigators are company employees.

BALTIMORE – Cyclical natural progesterone appears to reduce the frequency of catamenial seizures in some women, a placebo-controlled study has found.

Women with a large number of perimenstrually exacerbated seizures who used progesterone experienced a significant decrease in their number of catamenial seizures. The higher the seizure count, the stronger the association became, Dr. Andrew G. Herzog reported during the annual meeting of the American Epilepsy Society.

"As the level of perimenstrual seizure exacerbation increased, the responder rate for progesterone also increased, from 21% at the lowest number of seizures to 57% ... at the highest number," said Dr. Herzog, a neurologist at Beth Israel Deaconess Medical Center, Boston. "This was significant compared to a rate of 10% to 20% for those on placebo."

Studies suggest that about 40% of women with epilepsy experience this hormonally-mediated form. There are three types of catamenial seizure patterns. Women with type 1 experience a seizure exacerbation in the perimenstrual phase. Women with type 2 have an exacerbation around the time of ovulation, and those with type 3 can experience increased seizure frequency throughout the second half of the menstrual cycle.

The seizures are thought to be related to the rapid changes of estrogen and progesterone during the menstrual cycle. Both hormones act on the neurotransmitter gamma-aminobutyric acid (GABA). Estrogen, an excitatory hormone, seems to increase its release, while progesterone suppresses it. Progesterone may also interfere with the activity of benzodiazepine anticonvulsants, Dr. Herzog said.

The phase III study comprised 294 women with partial-onset epilepsy and intractable seizures. The investigators grouped them by catamenial (130) or noncatamenial (164) epilepsy.

Each group was then randomly assigned to placebo or to therapy with placebo or cyclical natural progesterone extracted from the soy plant. This was given in 200-mg lozenge form, with a dosage of one lozenge three times daily on cycle days 14-25, one-half of a lozenge three times daily from days 26-27, a quarter of a lozenge three times on day 28, and placebo treatment from day 29 through day 13 of the next cycle.

Overall, there was no significant difference between placebo and progesterone in the primary outcome of at least a 50% decrease in seizure count in patients with or without catamenial epilepsy, either by all seizure types or the most severe types of seizures. A 50% decrease in seizure count was considered a clinically meaningful difference.

But the results were much different in a prespecified secondary analysis that examined response according to the type of catamenial seizure pattern.

Among those with type 1 catamenial epilepsy, the responder rate was significantly greater in those taking progesterone. "As the level of perimenstrual seizure frequency increased compared to the mid-follicular and luteal seizure frequencies, the responder rate for those on progesterone went from 21% to 57%, while the placebo responder rates stayed between 10% and 20%," Dr. Herzog said.

In another multivariate analysis that controlled for demographics, type of epilepsy, use of antiepileptic drugs, and catamenial seizure pattern, progesterone decreased perimenstrual seizures by 25% to 71%. This improvement in response rate again varied by seizure frequency in the perimenstrual period, compared with frequency at other times in the menstrual cycle.

"Given that we found a significant benefit for progesterone among this group of women, the next question is, ‘How many would be candidates for progesterone therapy?’ "

The progesterone response rate was not significantly different from placebo if the perimenstrual seizure frequency was 69% greater than the rest of the menstrual cycle – the predetermined cutoff for type 1 catamenial epilepsy.

If the perimenstrual seizure frequency doubled in comparison with the rest of the cycle, about 34% of women with catamenial epilepsy could respond to progesterone. That is a statistically significant, but not clinically relevant, rate, Dr. Herzog said.

However, progesterone could be of great benefit to about one-fifth of the women who have three times more perimenstrual seizures, compared with the rest of their cycle. "About 37% of women with this level of catamenial epilepsy would likely experience this clinically important reduction in seizures," Dr. Herzog said.

Progesterone has no approved indication in any seizure disorder, but Dr. Herzog said he has been using it off-label for more than 20 years. An approval from the Food and Drug Administration for progesterone in catamenial epilepsy would require multiple studies confirming his results – an effort he is prepared to undertake.

"Of course, we need to have enough women with catamenial epilepsy and enough funding to do the studies," he said. "It’s something we are working on."

The study was funded by the National Institutes of Health. Dr. Herzog had no financial declarations.

BALTIMORE – Cyclical natural progesterone appears to reduce the frequency of catamenial seizures in some women, a placebo-controlled study has found.

Women with a large number of perimenstrually exacerbated seizures who used progesterone experienced a significant decrease in their number of catamenial seizures. The higher the seizure count, the stronger the association became, Dr. Andrew G. Herzog reported during the annual meeting of the American Epilepsy Society.

"As the level of perimenstrual seizure exacerbation increased, the responder rate for progesterone also increased, from 21% at the lowest number of seizures to 57% ... at the highest number," said Dr. Herzog, a neurologist at Beth Israel Deaconess Medical Center, Boston. "This was significant compared to a rate of 10% to 20% for those on placebo."

Studies suggest that about 40% of women with epilepsy experience this hormonally-mediated form. There are three types of catamenial seizure patterns. Women with type 1 experience a seizure exacerbation in the perimenstrual phase. Women with type 2 have an exacerbation around the time of ovulation, and those with type 3 can experience increased seizure frequency throughout the second half of the menstrual cycle.

The seizures are thought to be related to the rapid changes of estrogen and progesterone during the menstrual cycle. Both hormones act on the neurotransmitter gamma-aminobutyric acid (GABA). Estrogen, an excitatory hormone, seems to increase its release, while progesterone suppresses it. Progesterone may also interfere with the activity of benzodiazepine anticonvulsants, Dr. Herzog said.

The phase III study comprised 294 women with partial-onset epilepsy and intractable seizures. The investigators grouped them by catamenial (130) or noncatamenial (164) epilepsy.

Each group was then randomly assigned to placebo or to therapy with placebo or cyclical natural progesterone extracted from the soy plant. This was given in 200-mg lozenge form, with a dosage of one lozenge three times daily on cycle days 14-25, one-half of a lozenge three times daily from days 26-27, a quarter of a lozenge three times on day 28, and placebo treatment from day 29 through day 13 of the next cycle.

Overall, there was no significant difference between placebo and progesterone in the primary outcome of at least a 50% decrease in seizure count in patients with or without catamenial epilepsy, either by all seizure types or the most severe types of seizures. A 50% decrease in seizure count was considered a clinically meaningful difference.

But the results were much different in a prespecified secondary analysis that examined response according to the type of catamenial seizure pattern.

Among those with type 1 catamenial epilepsy, the responder rate was significantly greater in those taking progesterone. "As the level of perimenstrual seizure frequency increased compared to the mid-follicular and luteal seizure frequencies, the responder rate for those on progesterone went from 21% to 57%, while the placebo responder rates stayed between 10% and 20%," Dr. Herzog said.

In another multivariate analysis that controlled for demographics, type of epilepsy, use of antiepileptic drugs, and catamenial seizure pattern, progesterone decreased perimenstrual seizures by 25% to 71%. This improvement in response rate again varied by seizure frequency in the perimenstrual period, compared with frequency at other times in the menstrual cycle.

"Given that we found a significant benefit for progesterone among this group of women, the next question is, ‘How many would be candidates for progesterone therapy?’ "

The progesterone response rate was not significantly different from placebo if the perimenstrual seizure frequency was 69% greater than the rest of the menstrual cycle – the predetermined cutoff for type 1 catamenial epilepsy.

If the perimenstrual seizure frequency doubled in comparison with the rest of the cycle, about 34% of women with catamenial epilepsy could respond to progesterone. That is a statistically significant, but not clinically relevant, rate, Dr. Herzog said.

However, progesterone could be of great benefit to about one-fifth of the women who have three times more perimenstrual seizures, compared with the rest of their cycle. "About 37% of women with this level of catamenial epilepsy would likely experience this clinically important reduction in seizures," Dr. Herzog said.

Progesterone has no approved indication in any seizure disorder, but Dr. Herzog said he has been using it off-label for more than 20 years. An approval from the Food and Drug Administration for progesterone in catamenial epilepsy would require multiple studies confirming his results – an effort he is prepared to undertake.

"Of course, we need to have enough women with catamenial epilepsy and enough funding to do the studies," he said. "It’s something we are working on."

The study was funded by the National Institutes of Health. Dr. Herzog had no financial declarations.

BALTIMORE – Cyclical natural progesterone appears to reduce the frequency of catamenial seizures in some women, a placebo-controlled study has found.

Women with a large number of perimenstrually exacerbated seizures who used progesterone experienced a significant decrease in their number of catamenial seizures. The higher the seizure count, the stronger the association became, Dr. Andrew G. Herzog reported during the annual meeting of the American Epilepsy Society.

"As the level of perimenstrual seizure exacerbation increased, the responder rate for progesterone also increased, from 21% at the lowest number of seizures to 57% ... at the highest number," said Dr. Herzog, a neurologist at Beth Israel Deaconess Medical Center, Boston. "This was significant compared to a rate of 10% to 20% for those on placebo."

Studies suggest that about 40% of women with epilepsy experience this hormonally-mediated form. There are three types of catamenial seizure patterns. Women with type 1 experience a seizure exacerbation in the perimenstrual phase. Women with type 2 have an exacerbation around the time of ovulation, and those with type 3 can experience increased seizure frequency throughout the second half of the menstrual cycle.

The seizures are thought to be related to the rapid changes of estrogen and progesterone during the menstrual cycle. Both hormones act on the neurotransmitter gamma-aminobutyric acid (GABA). Estrogen, an excitatory hormone, seems to increase its release, while progesterone suppresses it. Progesterone may also interfere with the activity of benzodiazepine anticonvulsants, Dr. Herzog said.

The phase III study comprised 294 women with partial-onset epilepsy and intractable seizures. The investigators grouped them by catamenial (130) or noncatamenial (164) epilepsy.

Each group was then randomly assigned to placebo or to therapy with placebo or cyclical natural progesterone extracted from the soy plant. This was given in 200-mg lozenge form, with a dosage of one lozenge three times daily on cycle days 14-25, one-half of a lozenge three times daily from days 26-27, a quarter of a lozenge three times on day 28, and placebo treatment from day 29 through day 13 of the next cycle.

Overall, there was no significant difference between placebo and progesterone in the primary outcome of at least a 50% decrease in seizure count in patients with or without catamenial epilepsy, either by all seizure types or the most severe types of seizures. A 50% decrease in seizure count was considered a clinically meaningful difference.

But the results were much different in a prespecified secondary analysis that examined response according to the type of catamenial seizure pattern.

Among those with type 1 catamenial epilepsy, the responder rate was significantly greater in those taking progesterone. "As the level of perimenstrual seizure frequency increased compared to the mid-follicular and luteal seizure frequencies, the responder rate for those on progesterone went from 21% to 57%, while the placebo responder rates stayed between 10% and 20%," Dr. Herzog said.

In another multivariate analysis that controlled for demographics, type of epilepsy, use of antiepileptic drugs, and catamenial seizure pattern, progesterone decreased perimenstrual seizures by 25% to 71%. This improvement in response rate again varied by seizure frequency in the perimenstrual period, compared with frequency at other times in the menstrual cycle.

"Given that we found a significant benefit for progesterone among this group of women, the next question is, ‘How many would be candidates for progesterone therapy?’ "

The progesterone response rate was not significantly different from placebo if the perimenstrual seizure frequency was 69% greater than the rest of the menstrual cycle – the predetermined cutoff for type 1 catamenial epilepsy.

If the perimenstrual seizure frequency doubled in comparison with the rest of the cycle, about 34% of women with catamenial epilepsy could respond to progesterone. That is a statistically significant, but not clinically relevant, rate, Dr. Herzog said.

However, progesterone could be of great benefit to about one-fifth of the women who have three times more perimenstrual seizures, compared with the rest of their cycle. "About 37% of women with this level of catamenial epilepsy would likely experience this clinically important reduction in seizures," Dr. Herzog said.

Progesterone has no approved indication in any seizure disorder, but Dr. Herzog said he has been using it off-label for more than 20 years. An approval from the Food and Drug Administration for progesterone in catamenial epilepsy would require multiple studies confirming his results – an effort he is prepared to undertake.

"Of course, we need to have enough women with catamenial epilepsy and enough funding to do the studies," he said. "It’s something we are working on."

The study was funded by the National Institutes of Health. Dr. Herzog had no financial declarations.

BALTIMORE – Despite the very real chance of living a seizure-free life, many epilepsy patients with an excellent surgical prognosis continue to walk away from the procedures.

Researchers at the annual meeting of the American Epilepsy Society agreed: It’s not always easy to convince a patient with refractory seizures that removing part of his or her brain could be the best treatment option.

"Many times, you bring up the idea of surgery, and see a look of shock and horror," Dr. Chad Carlson said in a press briefing. "Some are intrigued by the idea that their seizures could be reduced or even eliminated, but there is a real population who are either apprehensive or who flatly say: ‘You are not taking out a piece of my brain.’ "

Dr. Carlson and his colleagues categorized 445 patients with intractable seizures into three groups, using a set of clinical characteristics predictive of surgical outcome. Grade 1 patients (110) had the highest likelihood of becoming seizure free.

"What surprised us was that only 43 of these patients went on to have surgery" at the center, he said. The attrition rate for epilepsy surgery is frustrating, especially in light of the outcomes for those who did have it. "At 18 months, 89% were completely free of seizures," Dr. Carlson said.

In a second study examining why patients refuse surgery, Dr. Christopher T. Anderson, director of the epilepsy monitoring unit at the University of Pennsylvania, Philadelphia, discussed a cohort of 32 patients, all of whom were good surgical candidates and who underwent an intensive, year-long presurgical evaluation.

The process is time consuming, expensive, and not without risk, since some of the tests are invasive – electroencephalograms, high-resolution MRIs, positron emission tomography, the intracarotid sodium amobarbital procedure to localize the brain’s language center, and a comprehensive neuropsychological test battery. The evaluation costs up to $10,000, he added.

After completing the process, 9 of the 23 surgical candidates refused to go forward with the procedure. The review identified several characteristics that predicted both acceptance and rejection of surgery.

The patients were an average of 48 years; their epilepsy began at a median age of 22 years. Despite having tried a median of six drugs, the patients continued to have up to 10 or more seizures each month.

There were some significant between-group differences, which Dr. Anderson said could be used to predict which patients eventually would accept or refuse surgery. Easily treatable psychiatric disorders were some of the most striking. Nearly half (44%) of the refusers had anxiety and 11% had depression, compared with 4% for each disorder among the surgery group. In fact, Dr. Anderson said, most of those who accepted surgery (83%) had no psychiatric disorder.

"These problems are ones that are easily treatable, if not completely solvable," he said.

Factors associated with the seizures themselves also influenced decision-making. Patients who had more seizures each month (average, 12) were more likely to accept the procedure than those with fewer seizures (average, 3).

Patients who perceived that their seizures seriously impeded their life also were more likely to accept surgery. "Those who thought of their seizures as very disabling or as a stigma, embarrassing, or dangerous were much more likely to opt for surgery," Dr. Anderson noted.

Patients who deferred surgery were significantly more likely to have a general fear of surgery and surgical complications. "They cited a lack of comfort with surgery, complications with the surgery and anesthesia, and other health conditions that might affect surgery, like diabetes, hypertension, even though these are all easily managed in the operating room," he said.

Some patients perceived the surgery as experimental and expressed worry about being a "guinea pig."

"I think we need to try a lot more to educate patients on the safety of epilepsy surgery," he said. "In no way is this experimental."

The study drives home the point that some perceived barriers could be overcome with education and open communication. "We might want to look at interventions to help patients understand the surgery. Even a program of desensitizing patients to the operating room might help," Dr. Anderson said.

Dr. Carlson, director of the Comprehensive Epilepsy Center’s video EEG lab at NYU Langone Medical Center, New York, faced a similar issue. The 39% of his cohort (43) who did have resection had excellent outcomes, but the rest of the patients were not ready to make the decision.

"Many of them did not even progress to our multidisciplinary conference, even though they were admitted for presurgical evaluation. At some point, 37% of the cohort (41) voted with their feet. They left and never followed up with us."

Among this group were 25 who had become seizure-free during the observation time. Although the data say that this probably wouldn’t continue, they still decided not to pursue the surgery, Dr. Carlson said.

A small group (8) was not seizure free but decided that their seizure control was "good enough," he said. "It wasn’t what an epileptologist would consider good control, but it wasn’t serious enough for those patients to have the surgery."

The remaining patients were lost to follow-up or had no record of a specific reason for refusing surgery. Insurance denials only affected two patients who wanted surgery.

Some of those lost who were to follow-up probably eventually had surgery at another center. Patients seek multiple opinions "until they find one that they agree with" or a provider "clicks" with them, Dr. Carlson said.

Both researchers said that primary neurologists and other providers could help by getting the topic of surgery on the table earlier. "It’s something that should be done at multiple time points," Dr. Anderson said. "Mention that they might be a candidate for brain surgery since medical therapy isn’t working well. Explain this means removal of part of the brain and ask what they feel about that – would they consider it if it would get rid of their seizures?

"If they hear this multiple times, then you are introducing this concept and revisiting it with more detailed information each time. Then the patient might be more willing to take that leap."

Neither Dr. Anderson nor Dr. Carlson had any financial declarations.

BALTIMORE – Despite the very real chance of living a seizure-free life, many epilepsy patients with an excellent surgical prognosis continue to walk away from the procedures.

Researchers at the annual meeting of the American Epilepsy Society agreed: It’s not always easy to convince a patient with refractory seizures that removing part of his or her brain could be the best treatment option.

"Many times, you bring up the idea of surgery, and see a look of shock and horror," Dr. Chad Carlson said in a press briefing. "Some are intrigued by the idea that their seizures could be reduced or even eliminated, but there is a real population who are either apprehensive or who flatly say: ‘You are not taking out a piece of my brain.’ "

Dr. Carlson and his colleagues categorized 445 patients with intractable seizures into three groups, using a set of clinical characteristics predictive of surgical outcome. Grade 1 patients (110) had the highest likelihood of becoming seizure free.

"What surprised us was that only 43 of these patients went on to have surgery" at the center, he said. The attrition rate for epilepsy surgery is frustrating, especially in light of the outcomes for those who did have it. "At 18 months, 89% were completely free of seizures," Dr. Carlson said.

In a second study examining why patients refuse surgery, Dr. Christopher T. Anderson, director of the epilepsy monitoring unit at the University of Pennsylvania, Philadelphia, discussed a cohort of 32 patients, all of whom were good surgical candidates and who underwent an intensive, year-long presurgical evaluation.

The process is time consuming, expensive, and not without risk, since some of the tests are invasive – electroencephalograms, high-resolution MRIs, positron emission tomography, the intracarotid sodium amobarbital procedure to localize the brain’s language center, and a comprehensive neuropsychological test battery. The evaluation costs up to $10,000, he added.

After completing the process, 9 of the 23 surgical candidates refused to go forward with the procedure. The review identified several characteristics that predicted both acceptance and rejection of surgery.

The patients were an average of 48 years; their epilepsy began at a median age of 22 years. Despite having tried a median of six drugs, the patients continued to have up to 10 or more seizures each month.

There were some significant between-group differences, which Dr. Anderson said could be used to predict which patients eventually would accept or refuse surgery. Easily treatable psychiatric disorders were some of the most striking. Nearly half (44%) of the refusers had anxiety and 11% had depression, compared with 4% for each disorder among the surgery group. In fact, Dr. Anderson said, most of those who accepted surgery (83%) had no psychiatric disorder.

"These problems are ones that are easily treatable, if not completely solvable," he said.

Factors associated with the seizures themselves also influenced decision-making. Patients who had more seizures each month (average, 12) were more likely to accept the procedure than those with fewer seizures (average, 3).

Patients who perceived that their seizures seriously impeded their life also were more likely to accept surgery. "Those who thought of their seizures as very disabling or as a stigma, embarrassing, or dangerous were much more likely to opt for surgery," Dr. Anderson noted.

Patients who deferred surgery were significantly more likely to have a general fear of surgery and surgical complications. "They cited a lack of comfort with surgery, complications with the surgery and anesthesia, and other health conditions that might affect surgery, like diabetes, hypertension, even though these are all easily managed in the operating room," he said.

Some patients perceived the surgery as experimental and expressed worry about being a "guinea pig."

"I think we need to try a lot more to educate patients on the safety of epilepsy surgery," he said. "In no way is this experimental."

The study drives home the point that some perceived barriers could be overcome with education and open communication. "We might want to look at interventions to help patients understand the surgery. Even a program of desensitizing patients to the operating room might help," Dr. Anderson said.

Dr. Carlson, director of the Comprehensive Epilepsy Center’s video EEG lab at NYU Langone Medical Center, New York, faced a similar issue. The 39% of his cohort (43) who did have resection had excellent outcomes, but the rest of the patients were not ready to make the decision.

"Many of them did not even progress to our multidisciplinary conference, even though they were admitted for presurgical evaluation. At some point, 37% of the cohort (41) voted with their feet. They left and never followed up with us."

Among this group were 25 who had become seizure-free during the observation time. Although the data say that this probably wouldn’t continue, they still decided not to pursue the surgery, Dr. Carlson said.

A small group (8) was not seizure free but decided that their seizure control was "good enough," he said. "It wasn’t what an epileptologist would consider good control, but it wasn’t serious enough for those patients to have the surgery."

The remaining patients were lost to follow-up or had no record of a specific reason for refusing surgery. Insurance denials only affected two patients who wanted surgery.

Some of those lost who were to follow-up probably eventually had surgery at another center. Patients seek multiple opinions "until they find one that they agree with" or a provider "clicks" with them, Dr. Carlson said.

Both researchers said that primary neurologists and other providers could help by getting the topic of surgery on the table earlier. "It’s something that should be done at multiple time points," Dr. Anderson said. "Mention that they might be a candidate for brain surgery since medical therapy isn’t working well. Explain this means removal of part of the brain and ask what they feel about that – would they consider it if it would get rid of their seizures?

"If they hear this multiple times, then you are introducing this concept and revisiting it with more detailed information each time. Then the patient might be more willing to take that leap."

Neither Dr. Anderson nor Dr. Carlson had any financial declarations.

BALTIMORE – Despite the very real chance of living a seizure-free life, many epilepsy patients with an excellent surgical prognosis continue to walk away from the procedures.

Researchers at the annual meeting of the American Epilepsy Society agreed: It’s not always easy to convince a patient with refractory seizures that removing part of his or her brain could be the best treatment option.

"Many times, you bring up the idea of surgery, and see a look of shock and horror," Dr. Chad Carlson said in a press briefing. "Some are intrigued by the idea that their seizures could be reduced or even eliminated, but there is a real population who are either apprehensive or who flatly say: ‘You are not taking out a piece of my brain.’ "

Dr. Carlson and his colleagues categorized 445 patients with intractable seizures into three groups, using a set of clinical characteristics predictive of surgical outcome. Grade 1 patients (110) had the highest likelihood of becoming seizure free.

"What surprised us was that only 43 of these patients went on to have surgery" at the center, he said. The attrition rate for epilepsy surgery is frustrating, especially in light of the outcomes for those who did have it. "At 18 months, 89% were completely free of seizures," Dr. Carlson said.

In a second study examining why patients refuse surgery, Dr. Christopher T. Anderson, director of the epilepsy monitoring unit at the University of Pennsylvania, Philadelphia, discussed a cohort of 32 patients, all of whom were good surgical candidates and who underwent an intensive, year-long presurgical evaluation.

The process is time consuming, expensive, and not without risk, since some of the tests are invasive – electroencephalograms, high-resolution MRIs, positron emission tomography, the intracarotid sodium amobarbital procedure to localize the brain’s language center, and a comprehensive neuropsychological test battery. The evaluation costs up to $10,000, he added.

After completing the process, 9 of the 23 surgical candidates refused to go forward with the procedure. The review identified several characteristics that predicted both acceptance and rejection of surgery.

The patients were an average of 48 years; their epilepsy began at a median age of 22 years. Despite having tried a median of six drugs, the patients continued to have up to 10 or more seizures each month.

There were some significant between-group differences, which Dr. Anderson said could be used to predict which patients eventually would accept or refuse surgery. Easily treatable psychiatric disorders were some of the most striking. Nearly half (44%) of the refusers had anxiety and 11% had depression, compared with 4% for each disorder among the surgery group. In fact, Dr. Anderson said, most of those who accepted surgery (83%) had no psychiatric disorder.

"These problems are ones that are easily treatable, if not completely solvable," he said.

Factors associated with the seizures themselves also influenced decision-making. Patients who had more seizures each month (average, 12) were more likely to accept the procedure than those with fewer seizures (average, 3).

Patients who perceived that their seizures seriously impeded their life also were more likely to accept surgery. "Those who thought of their seizures as very disabling or as a stigma, embarrassing, or dangerous were much more likely to opt for surgery," Dr. Anderson noted.

Patients who deferred surgery were significantly more likely to have a general fear of surgery and surgical complications. "They cited a lack of comfort with surgery, complications with the surgery and anesthesia, and other health conditions that might affect surgery, like diabetes, hypertension, even though these are all easily managed in the operating room," he said.

Some patients perceived the surgery as experimental and expressed worry about being a "guinea pig."

"I think we need to try a lot more to educate patients on the safety of epilepsy surgery," he said. "In no way is this experimental."

The study drives home the point that some perceived barriers could be overcome with education and open communication. "We might want to look at interventions to help patients understand the surgery. Even a program of desensitizing patients to the operating room might help," Dr. Anderson said.

Dr. Carlson, director of the Comprehensive Epilepsy Center’s video EEG lab at NYU Langone Medical Center, New York, faced a similar issue. The 39% of his cohort (43) who did have resection had excellent outcomes, but the rest of the patients were not ready to make the decision.

"Many of them did not even progress to our multidisciplinary conference, even though they were admitted for presurgical evaluation. At some point, 37% of the cohort (41) voted with their feet. They left and never followed up with us."

Among this group were 25 who had become seizure-free during the observation time. Although the data say that this probably wouldn’t continue, they still decided not to pursue the surgery, Dr. Carlson said.

A small group (8) was not seizure free but decided that their seizure control was "good enough," he said. "It wasn’t what an epileptologist would consider good control, but it wasn’t serious enough for those patients to have the surgery."

The remaining patients were lost to follow-up or had no record of a specific reason for refusing surgery. Insurance denials only affected two patients who wanted surgery.

Some of those lost who were to follow-up probably eventually had surgery at another center. Patients seek multiple opinions "until they find one that they agree with" or a provider "clicks" with them, Dr. Carlson said.

Both researchers said that primary neurologists and other providers could help by getting the topic of surgery on the table earlier. "It’s something that should be done at multiple time points," Dr. Anderson said. "Mention that they might be a candidate for brain surgery since medical therapy isn’t working well. Explain this means removal of part of the brain and ask what they feel about that – would they consider it if it would get rid of their seizures?

"If they hear this multiple times, then you are introducing this concept and revisiting it with more detailed information each time. Then the patient might be more willing to take that leap."

Neither Dr. Anderson nor Dr. Carlson had any financial declarations.

BALTIMORE – Gamma Knife surgery significantly reduced the number of seizures in a subset of patients with rare congenital tumors, based on data from a prospective trial of 64 patients presented at the annual meeting of the American Epilepsy Society.

Hypothalamic hamartomas (congenital tumors that are attached to functional brain tissue) can cause a range of complications, including intractable seizures, said Dr. Jean Régis of Timone University Hospital in Marseilles, France.

Dr. Régis’s center is one of the few in the world where Gamma Knife surgery is performed on patients with hypothalamic hamartomas (HH). His ongoing study includes patients as young as age 3 years who have undergone surgery for HH. After a median of 62 months’ follow-up, the number of seizures in this group dropped from a median of 92 per month to a median of 6 per month.

But the benefits of the surgery extended beyond seizure reduction, Dr. Régis emphasized. Global psychiatric and cognitive comorbidity was considered cured in 28% of patients, improved in 56% of patients, and stable in 8% of patients at postsurgical follow-up.

Hyperkinetic behavior was identified in 34 patients at baseline. After surgery, 35% of patients were cured of hyperkinetic behavior and 30% were very much improved, Dr. Régis said. In addition, heteroaggressive behavior was noted in 56 patients at baseline, but after surgery, the behavior completely disappeared in 53% of these patients and was dramatically reduced in 32%, he added.

The specific approach for Gamma Knife surgery depends on the anatomy of the lesion, Dr. Régis noted. Most of the patients in this study had hamartomas of types I-IV, which are the smaller lesions, he said. The median marginal dose of radiation was 17 Gy and the median volume was 419 mm³.

"Longer follow-up remains mandatory due to the young age of this population," Dr. Régis said.

"Beyond seizure reduction, the improvement of the psychiatric, cognitive condition, and school and social insertion is turning out to be the major benefit of GKS in this frequently catastrophic epilepsy group," he added.

Dr. Régis is the president of the International Stereotactic Radiosurgery Society (ISRS) and chairman of its 2011 congress. He said he has raised major congress funding from the following manufacturers of radiosurgery devices: Accuray, BrainLab, Elekta, and Radionic.

BALTIMORE – Gamma Knife surgery significantly reduced the number of seizures in a subset of patients with rare congenital tumors, based on data from a prospective trial of 64 patients presented at the annual meeting of the American Epilepsy Society.

Hypothalamic hamartomas (congenital tumors that are attached to functional brain tissue) can cause a range of complications, including intractable seizures, said Dr. Jean Régis of Timone University Hospital in Marseilles, France.

Dr. Régis’s center is one of the few in the world where Gamma Knife surgery is performed on patients with hypothalamic hamartomas (HH). His ongoing study includes patients as young as age 3 years who have undergone surgery for HH. After a median of 62 months’ follow-up, the number of seizures in this group dropped from a median of 92 per month to a median of 6 per month.

But the benefits of the surgery extended beyond seizure reduction, Dr. Régis emphasized. Global psychiatric and cognitive comorbidity was considered cured in 28% of patients, improved in 56% of patients, and stable in 8% of patients at postsurgical follow-up.

Hyperkinetic behavior was identified in 34 patients at baseline. After surgery, 35% of patients were cured of hyperkinetic behavior and 30% were very much improved, Dr. Régis said. In addition, heteroaggressive behavior was noted in 56 patients at baseline, but after surgery, the behavior completely disappeared in 53% of these patients and was dramatically reduced in 32%, he added.

The specific approach for Gamma Knife surgery depends on the anatomy of the lesion, Dr. Régis noted. Most of the patients in this study had hamartomas of types I-IV, which are the smaller lesions, he said. The median marginal dose of radiation was 17 Gy and the median volume was 419 mm³.

"Longer follow-up remains mandatory due to the young age of this population," Dr. Régis said.

"Beyond seizure reduction, the improvement of the psychiatric, cognitive condition, and school and social insertion is turning out to be the major benefit of GKS in this frequently catastrophic epilepsy group," he added.

Dr. Régis is the president of the International Stereotactic Radiosurgery Society (ISRS) and chairman of its 2011 congress. He said he has raised major congress funding from the following manufacturers of radiosurgery devices: Accuray, BrainLab, Elekta, and Radionic.

BALTIMORE – Gamma Knife surgery significantly reduced the number of seizures in a subset of patients with rare congenital tumors, based on data from a prospective trial of 64 patients presented at the annual meeting of the American Epilepsy Society.

Hypothalamic hamartomas (congenital tumors that are attached to functional brain tissue) can cause a range of complications, including intractable seizures, said Dr. Jean Régis of Timone University Hospital in Marseilles, France.

Dr. Régis’s center is one of the few in the world where Gamma Knife surgery is performed on patients with hypothalamic hamartomas (HH). His ongoing study includes patients as young as age 3 years who have undergone surgery for HH. After a median of 62 months’ follow-up, the number of seizures in this group dropped from a median of 92 per month to a median of 6 per month.

But the benefits of the surgery extended beyond seizure reduction, Dr. Régis emphasized. Global psychiatric and cognitive comorbidity was considered cured in 28% of patients, improved in 56% of patients, and stable in 8% of patients at postsurgical follow-up.

Hyperkinetic behavior was identified in 34 patients at baseline. After surgery, 35% of patients were cured of hyperkinetic behavior and 30% were very much improved, Dr. Régis said. In addition, heteroaggressive behavior was noted in 56 patients at baseline, but after surgery, the behavior completely disappeared in 53% of these patients and was dramatically reduced in 32%, he added.

The specific approach for Gamma Knife surgery depends on the anatomy of the lesion, Dr. Régis noted. Most of the patients in this study had hamartomas of types I-IV, which are the smaller lesions, he said. The median marginal dose of radiation was 17 Gy and the median volume was 419 mm³.

"Longer follow-up remains mandatory due to the young age of this population," Dr. Régis said.

"Beyond seizure reduction, the improvement of the psychiatric, cognitive condition, and school and social insertion is turning out to be the major benefit of GKS in this frequently catastrophic epilepsy group," he added.

Dr. Régis is the president of the International Stereotactic Radiosurgery Society (ISRS) and chairman of its 2011 congress. He said he has raised major congress funding from the following manufacturers of radiosurgery devices: Accuray, BrainLab, Elekta, and Radionic.