Primary care docs unsure when to refer for pediatric epilepsy surgery

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SAN DIEGO – A majority of pediatricians and family practitioners in a central Texas survey were unsure when pediatric epilepsy should be considered refractory and children should be referred for possible surgery.

Researchers from the epilepsy program at the Dell Children’s Medical Center in Austin surveyed 84 pediatricians, 44 family practitioners, and 18 neurologists or neurosurgeons to gauge their understanding of epilepsy management. Respondents treated a median of 2.5 pediatric epilepsy patients per month (range, 0-200), and about half had been in practice for less than 15 years.

Dr. Collin Hovinga

The neurologists and neurosurgeons scored well, but among primary care providers, "there was a clear lack of understanding of when you would consider someone refractory and when you would want to refer someone to a specialist or work them up for epilepsy surgery," said investigator Collin Hovinga, Pharm.D., the epilepsy program’s director of neuropharmacology.

Only 39% (57) of respondents correctly agreed that children should be considered to have refractory epilepsy after failing two or three antiseizure medications; the rest were unsure or disagreed with the statement. More than a third (52) were unsure if failing six medications constituted refractory epilepsy.

About 70% (104) did not think or were unsure whether surgery is an effective option for partial epilepsy; 86% (126) were unsure or doubtful if it would help in generalized epilepsy. Only about half of respondents agreed that surgery should be considered for children who have failed 3 years of antiseizure medications.

Surgery for partial or generalized epilepsy "probably has the biggest impact on whether you can cure somebody or hugely decrease their seizure load. If two-thirds of respondents are unsure of that, it tells me we have completely failed in communicating what we do to professionals who refer to us," said coinvestigator Dr. Freedom F. Perkins Jr., a pediatric epileptologist at Dell.

Dr. Freedom F. Perkins Jr.

Education is the answer. "It is incumbent on us to reach out to our referral sources" – pediatricians and family practitioners – "to make sure they understand these things." Webinars could help, but might only draw physicians already interested in and knowledgeable about epilepsy. "The old-fashioned shoe leather" approach might be better; "you get in your car, you meet people, and you talk," Dr. Perkins said at the annual meeting of the American Epilepsy Society.

The researchers plan to do just that with primary care physicians around Austin, and then repeat the survey in perhaps a year to see if the efforts improved understanding and referral patterns.

Dr. Hovinga and Dr. Perkins said they had no relevant financial disclosures.

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SAN DIEGO – A majority of pediatricians and family practitioners in a central Texas survey were unsure when pediatric epilepsy should be considered refractory and children should be referred for possible surgery.

Researchers from the epilepsy program at the Dell Children’s Medical Center in Austin surveyed 84 pediatricians, 44 family practitioners, and 18 neurologists or neurosurgeons to gauge their understanding of epilepsy management. Respondents treated a median of 2.5 pediatric epilepsy patients per month (range, 0-200), and about half had been in practice for less than 15 years.

Dr. Collin Hovinga

The neurologists and neurosurgeons scored well, but among primary care providers, "there was a clear lack of understanding of when you would consider someone refractory and when you would want to refer someone to a specialist or work them up for epilepsy surgery," said investigator Collin Hovinga, Pharm.D., the epilepsy program’s director of neuropharmacology.

Only 39% (57) of respondents correctly agreed that children should be considered to have refractory epilepsy after failing two or three antiseizure medications; the rest were unsure or disagreed with the statement. More than a third (52) were unsure if failing six medications constituted refractory epilepsy.

About 70% (104) did not think or were unsure whether surgery is an effective option for partial epilepsy; 86% (126) were unsure or doubtful if it would help in generalized epilepsy. Only about half of respondents agreed that surgery should be considered for children who have failed 3 years of antiseizure medications.

Surgery for partial or generalized epilepsy "probably has the biggest impact on whether you can cure somebody or hugely decrease their seizure load. If two-thirds of respondents are unsure of that, it tells me we have completely failed in communicating what we do to professionals who refer to us," said coinvestigator Dr. Freedom F. Perkins Jr., a pediatric epileptologist at Dell.

Dr. Freedom F. Perkins Jr.

Education is the answer. "It is incumbent on us to reach out to our referral sources" – pediatricians and family practitioners – "to make sure they understand these things." Webinars could help, but might only draw physicians already interested in and knowledgeable about epilepsy. "The old-fashioned shoe leather" approach might be better; "you get in your car, you meet people, and you talk," Dr. Perkins said at the annual meeting of the American Epilepsy Society.

The researchers plan to do just that with primary care physicians around Austin, and then repeat the survey in perhaps a year to see if the efforts improved understanding and referral patterns.

Dr. Hovinga and Dr. Perkins said they had no relevant financial disclosures.

SAN DIEGO – A majority of pediatricians and family practitioners in a central Texas survey were unsure when pediatric epilepsy should be considered refractory and children should be referred for possible surgery.

Researchers from the epilepsy program at the Dell Children’s Medical Center in Austin surveyed 84 pediatricians, 44 family practitioners, and 18 neurologists or neurosurgeons to gauge their understanding of epilepsy management. Respondents treated a median of 2.5 pediatric epilepsy patients per month (range, 0-200), and about half had been in practice for less than 15 years.

Dr. Collin Hovinga

The neurologists and neurosurgeons scored well, but among primary care providers, "there was a clear lack of understanding of when you would consider someone refractory and when you would want to refer someone to a specialist or work them up for epilepsy surgery," said investigator Collin Hovinga, Pharm.D., the epilepsy program’s director of neuropharmacology.

Only 39% (57) of respondents correctly agreed that children should be considered to have refractory epilepsy after failing two or three antiseizure medications; the rest were unsure or disagreed with the statement. More than a third (52) were unsure if failing six medications constituted refractory epilepsy.

About 70% (104) did not think or were unsure whether surgery is an effective option for partial epilepsy; 86% (126) were unsure or doubtful if it would help in generalized epilepsy. Only about half of respondents agreed that surgery should be considered for children who have failed 3 years of antiseizure medications.

Surgery for partial or generalized epilepsy "probably has the biggest impact on whether you can cure somebody or hugely decrease their seizure load. If two-thirds of respondents are unsure of that, it tells me we have completely failed in communicating what we do to professionals who refer to us," said coinvestigator Dr. Freedom F. Perkins Jr., a pediatric epileptologist at Dell.

Dr. Freedom F. Perkins Jr.

Education is the answer. "It is incumbent on us to reach out to our referral sources" – pediatricians and family practitioners – "to make sure they understand these things." Webinars could help, but might only draw physicians already interested in and knowledgeable about epilepsy. "The old-fashioned shoe leather" approach might be better; "you get in your car, you meet people, and you talk," Dr. Perkins said at the annual meeting of the American Epilepsy Society.

The researchers plan to do just that with primary care physicians around Austin, and then repeat the survey in perhaps a year to see if the efforts improved understanding and referral patterns.

Dr. Hovinga and Dr. Perkins said they had no relevant financial disclosures.

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AT THE ANNUAL MEETING OF THE AMERICAN EPILEPSY SOCIETY

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Major Finding: When asked the threshold of refractory epilepsy, 61% of physicians surveyed did not know, and most of these were family physicians or pediatricians.

Data Source: Survey of 146 physicians in central Texas.

Disclosures: The investigators said they had no relevant financial disclosures.

Laser ablation rivaled open surgery for epileptogenic lesions

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Craniotomies and open resections may soon no longer be necessary to remove focal, well-circumscribed refractory epileptogenic lesions from the brain, two small studies have shown.

Two research teams reported positive, early results for laser ablation, an alternative approach in which a narrow probe is inserted through a small hole in the skull to kill epileptogenic neurons with heat under real-time MRI and EEG guidance.

At the Sutter Neuroscience Institute in Sacramento, "we are having about a 70% [seizure-free] success rate" in the six children and two young adults who have undergone the procedure and been followed for up to a year," said neurologist Michael Chez, director of Sutter’s pediatric and adult epilepsy program. He and his team have treated lesions of the frontal, nonmesial temporal, occipital, and parietal lobes.

Dr. Michael Chez

"We’ve had some very nice results with a very minimally invasive technique. The outcomes are very promising. We have another six surgeries planned," he said at the annual meeting of the American Epilepsy Society.

Meanwhile, Miami Children’s Hospital reported about a 50% seizure-free success rate following laser ablation in 10 pediatric patients followed for up to 18 months. "The outcomes look comparable" to those achieved with open surgery, and should improve with additional experience. "I think [the technique] has incredible promise," said Dr. Ian Miller, director of neuroinformatics at the hospital.

A handful of epilepsy centers in the United States are developing the technique following the Food and Drug Administration’s approval for soft tissue ablation several years ago.

Hospital stays are much shorter with laser ablation, about 24 hours instead of 3 or more days following open surgery. Laser ablation is also probably less damaging to nearby healthy brain tissue, better able to reach deep-seated foci, more acceptable to patients and parents weary of open techniques, and better tolerated by patients who could not tolerate open procedures and the work-up that precedes them, said Dr. Chez, who noted that developmental disabilities ruled out open procedures in six of his eight patients.

To date, laser ablation has been used in perhaps 85 adult and pediatric epilepsy patients across the United States. Investigators will need to pool their outcomes to compare them to open surgery, and determine the best-case scenario where laser ablation would be helpful, said Miami Children’s neurosurgeon Sanjiv Bhatia, who is also developing the technique there.

After the probe is placed in the operating room – which takes about 30 minutes – patients are rolled into the MRI suite for monitoring during ablation. EEGs with plastic electrodes are monitored, as well. "We can see exactly where the probe is and the spike activity going away during ablation," Dr. Chez said.

Instead of using direct electrophysiologic recording, the investigators are using advanced functional imaging techniques including magnetic EEGs, three-dimensional computer modeling, and stereotactic probe guidance. "The question is if that is ultimately going to be enough to replace direct recordings," Dr. Bhatia said.

For now, the greatest challenge is accurately defining the epileptogenic lesion through a closed skull, without the benefit of the multiple-depth electrodes and grid mapping used during open surgery. "The key to these procedures is having very solid localization," Dr. Miller noted.

The researchers said they had no relevant financial disclosures.

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Craniotomies and open resections may soon no longer be necessary to remove focal, well-circumscribed refractory epileptogenic lesions from the brain, two small studies have shown.

Two research teams reported positive, early results for laser ablation, an alternative approach in which a narrow probe is inserted through a small hole in the skull to kill epileptogenic neurons with heat under real-time MRI and EEG guidance.

At the Sutter Neuroscience Institute in Sacramento, "we are having about a 70% [seizure-free] success rate" in the six children and two young adults who have undergone the procedure and been followed for up to a year," said neurologist Michael Chez, director of Sutter’s pediatric and adult epilepsy program. He and his team have treated lesions of the frontal, nonmesial temporal, occipital, and parietal lobes.

Dr. Michael Chez

"We’ve had some very nice results with a very minimally invasive technique. The outcomes are very promising. We have another six surgeries planned," he said at the annual meeting of the American Epilepsy Society.

Meanwhile, Miami Children’s Hospital reported about a 50% seizure-free success rate following laser ablation in 10 pediatric patients followed for up to 18 months. "The outcomes look comparable" to those achieved with open surgery, and should improve with additional experience. "I think [the technique] has incredible promise," said Dr. Ian Miller, director of neuroinformatics at the hospital.

A handful of epilepsy centers in the United States are developing the technique following the Food and Drug Administration’s approval for soft tissue ablation several years ago.

Hospital stays are much shorter with laser ablation, about 24 hours instead of 3 or more days following open surgery. Laser ablation is also probably less damaging to nearby healthy brain tissue, better able to reach deep-seated foci, more acceptable to patients and parents weary of open techniques, and better tolerated by patients who could not tolerate open procedures and the work-up that precedes them, said Dr. Chez, who noted that developmental disabilities ruled out open procedures in six of his eight patients.

To date, laser ablation has been used in perhaps 85 adult and pediatric epilepsy patients across the United States. Investigators will need to pool their outcomes to compare them to open surgery, and determine the best-case scenario where laser ablation would be helpful, said Miami Children’s neurosurgeon Sanjiv Bhatia, who is also developing the technique there.

After the probe is placed in the operating room – which takes about 30 minutes – patients are rolled into the MRI suite for monitoring during ablation. EEGs with plastic electrodes are monitored, as well. "We can see exactly where the probe is and the spike activity going away during ablation," Dr. Chez said.

Instead of using direct electrophysiologic recording, the investigators are using advanced functional imaging techniques including magnetic EEGs, three-dimensional computer modeling, and stereotactic probe guidance. "The question is if that is ultimately going to be enough to replace direct recordings," Dr. Bhatia said.

For now, the greatest challenge is accurately defining the epileptogenic lesion through a closed skull, without the benefit of the multiple-depth electrodes and grid mapping used during open surgery. "The key to these procedures is having very solid localization," Dr. Miller noted.

The researchers said they had no relevant financial disclosures.

Craniotomies and open resections may soon no longer be necessary to remove focal, well-circumscribed refractory epileptogenic lesions from the brain, two small studies have shown.

Two research teams reported positive, early results for laser ablation, an alternative approach in which a narrow probe is inserted through a small hole in the skull to kill epileptogenic neurons with heat under real-time MRI and EEG guidance.

At the Sutter Neuroscience Institute in Sacramento, "we are having about a 70% [seizure-free] success rate" in the six children and two young adults who have undergone the procedure and been followed for up to a year," said neurologist Michael Chez, director of Sutter’s pediatric and adult epilepsy program. He and his team have treated lesions of the frontal, nonmesial temporal, occipital, and parietal lobes.

Dr. Michael Chez

"We’ve had some very nice results with a very minimally invasive technique. The outcomes are very promising. We have another six surgeries planned," he said at the annual meeting of the American Epilepsy Society.

Meanwhile, Miami Children’s Hospital reported about a 50% seizure-free success rate following laser ablation in 10 pediatric patients followed for up to 18 months. "The outcomes look comparable" to those achieved with open surgery, and should improve with additional experience. "I think [the technique] has incredible promise," said Dr. Ian Miller, director of neuroinformatics at the hospital.

A handful of epilepsy centers in the United States are developing the technique following the Food and Drug Administration’s approval for soft tissue ablation several years ago.

Hospital stays are much shorter with laser ablation, about 24 hours instead of 3 or more days following open surgery. Laser ablation is also probably less damaging to nearby healthy brain tissue, better able to reach deep-seated foci, more acceptable to patients and parents weary of open techniques, and better tolerated by patients who could not tolerate open procedures and the work-up that precedes them, said Dr. Chez, who noted that developmental disabilities ruled out open procedures in six of his eight patients.

To date, laser ablation has been used in perhaps 85 adult and pediatric epilepsy patients across the United States. Investigators will need to pool their outcomes to compare them to open surgery, and determine the best-case scenario where laser ablation would be helpful, said Miami Children’s neurosurgeon Sanjiv Bhatia, who is also developing the technique there.

After the probe is placed in the operating room – which takes about 30 minutes – patients are rolled into the MRI suite for monitoring during ablation. EEGs with plastic electrodes are monitored, as well. "We can see exactly where the probe is and the spike activity going away during ablation," Dr. Chez said.

Instead of using direct electrophysiologic recording, the investigators are using advanced functional imaging techniques including magnetic EEGs, three-dimensional computer modeling, and stereotactic probe guidance. "The question is if that is ultimately going to be enough to replace direct recordings," Dr. Bhatia said.

For now, the greatest challenge is accurately defining the epileptogenic lesion through a closed skull, without the benefit of the multiple-depth electrodes and grid mapping used during open surgery. "The key to these procedures is having very solid localization," Dr. Miller noted.

The researchers said they had no relevant financial disclosures.

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Major Finding: Minimally invasive laser ablation of focal epileptogenic lesions produced about a 70% seizure-free success rate in a study of six children and two adults, and a 50% seizure-free success rate in a study of 10 children.

Data Source: Epilepsy patients with a maximum follow-up of 18 months.

Disclosures: The researchers said they had no relevant financial disclosures.

Loneliness common in youth with epilepsy

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A higher proportion of youth with epilepsy reports more bouts of loneliness and problems in social relationships compared with their healthy peers, results from a large Norwegian study showed.

The findings underscore the importance of asking youth with epilepsy about the impact the condition has on their lives, Dr. Kristin Alfstad said in an interview during a poster session at the annual meeting of the American Epilepsy Society. "To get them to open up: I often ask, ‘How do you like school? Are things okay at school?’ If they don’t function well in school, that’s often a sign of trouble. I’ll also ask them, ‘Do you have a best friend?’ "

Doug Brunk/IMNG Medical Media
Dr. Kristin Alfstad

Dr. Alfstad, a neurologist with the division of surgery and clinical neuroscience at Oslo University Hospital, Norway, and her associates previously published data showing a higher prevalence of symptoms of psychological distress and risk-taking behavior in youth with epilepsy compared with controls (Epilepsia 2011;52:1231-8; Acta. Neurol. Scand. Suppl. 2011;191:12-7). The purpose of the current analysis was to investigate how youth with epilepsy aged 16-19 years perceive their social relationships.

The researchers analyzed survey responses from 10,571 youth who were asked in 2002 to describe their feelings concerning social relationships. Questions could be answered as correct, partly correct, or not correct, and the researchers used chi-square analysis for testing categorical variables.

Next, they conducted a multivariate analysis, with feeling lonely as the dependent variable and having/having had epilepsy, gender, low family income, and living with a single parent as independent risk factors.

Of the 10,571 respondents, 114 reported having or having had epilepsy (1.2%). Compared with controls, a higher proportion of youth with epilepsy identified with the question: "I cannot choose whom I want to make friends with" (13.2% vs. 7.1%; P = .012), and "I have a feeling that nobody knows me well" (11.6% vs. 6.8%; P = .045). In addition, a higher proportion of youth with epilepsy stated that they felt lonely (10.7%, compared with 5.5% among controls).

Multivariate analysis revealed that low family income was the strongest predictor of feeling lonely (odds ratio 2.3; P less than .001), followed by having/having had epilepsy (OR 2.0; P = .026), female gender (OR 1.4; P less than .001), and living with a single parent (OR 1.3; P = .019).

The study was funded by the Norwegian Institute of Public Health. Dr. Alfstad said she had no relevant financial disclosures.

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A higher proportion of youth with epilepsy reports more bouts of loneliness and problems in social relationships compared with their healthy peers, results from a large Norwegian study showed.

The findings underscore the importance of asking youth with epilepsy about the impact the condition has on their lives, Dr. Kristin Alfstad said in an interview during a poster session at the annual meeting of the American Epilepsy Society. "To get them to open up: I often ask, ‘How do you like school? Are things okay at school?’ If they don’t function well in school, that’s often a sign of trouble. I’ll also ask them, ‘Do you have a best friend?’ "

Doug Brunk/IMNG Medical Media
Dr. Kristin Alfstad

Dr. Alfstad, a neurologist with the division of surgery and clinical neuroscience at Oslo University Hospital, Norway, and her associates previously published data showing a higher prevalence of symptoms of psychological distress and risk-taking behavior in youth with epilepsy compared with controls (Epilepsia 2011;52:1231-8; Acta. Neurol. Scand. Suppl. 2011;191:12-7). The purpose of the current analysis was to investigate how youth with epilepsy aged 16-19 years perceive their social relationships.

The researchers analyzed survey responses from 10,571 youth who were asked in 2002 to describe their feelings concerning social relationships. Questions could be answered as correct, partly correct, or not correct, and the researchers used chi-square analysis for testing categorical variables.

Next, they conducted a multivariate analysis, with feeling lonely as the dependent variable and having/having had epilepsy, gender, low family income, and living with a single parent as independent risk factors.

Of the 10,571 respondents, 114 reported having or having had epilepsy (1.2%). Compared with controls, a higher proportion of youth with epilepsy identified with the question: "I cannot choose whom I want to make friends with" (13.2% vs. 7.1%; P = .012), and "I have a feeling that nobody knows me well" (11.6% vs. 6.8%; P = .045). In addition, a higher proportion of youth with epilepsy stated that they felt lonely (10.7%, compared with 5.5% among controls).

Multivariate analysis revealed that low family income was the strongest predictor of feeling lonely (odds ratio 2.3; P less than .001), followed by having/having had epilepsy (OR 2.0; P = .026), female gender (OR 1.4; P less than .001), and living with a single parent (OR 1.3; P = .019).

The study was funded by the Norwegian Institute of Public Health. Dr. Alfstad said she had no relevant financial disclosures.

[email protected]

A higher proportion of youth with epilepsy reports more bouts of loneliness and problems in social relationships compared with their healthy peers, results from a large Norwegian study showed.

The findings underscore the importance of asking youth with epilepsy about the impact the condition has on their lives, Dr. Kristin Alfstad said in an interview during a poster session at the annual meeting of the American Epilepsy Society. "To get them to open up: I often ask, ‘How do you like school? Are things okay at school?’ If they don’t function well in school, that’s often a sign of trouble. I’ll also ask them, ‘Do you have a best friend?’ "

Doug Brunk/IMNG Medical Media
Dr. Kristin Alfstad

Dr. Alfstad, a neurologist with the division of surgery and clinical neuroscience at Oslo University Hospital, Norway, and her associates previously published data showing a higher prevalence of symptoms of psychological distress and risk-taking behavior in youth with epilepsy compared with controls (Epilepsia 2011;52:1231-8; Acta. Neurol. Scand. Suppl. 2011;191:12-7). The purpose of the current analysis was to investigate how youth with epilepsy aged 16-19 years perceive their social relationships.

The researchers analyzed survey responses from 10,571 youth who were asked in 2002 to describe their feelings concerning social relationships. Questions could be answered as correct, partly correct, or not correct, and the researchers used chi-square analysis for testing categorical variables.

Next, they conducted a multivariate analysis, with feeling lonely as the dependent variable and having/having had epilepsy, gender, low family income, and living with a single parent as independent risk factors.

Of the 10,571 respondents, 114 reported having or having had epilepsy (1.2%). Compared with controls, a higher proportion of youth with epilepsy identified with the question: "I cannot choose whom I want to make friends with" (13.2% vs. 7.1%; P = .012), and "I have a feeling that nobody knows me well" (11.6% vs. 6.8%; P = .045). In addition, a higher proportion of youth with epilepsy stated that they felt lonely (10.7%, compared with 5.5% among controls).

Multivariate analysis revealed that low family income was the strongest predictor of feeling lonely (odds ratio 2.3; P less than .001), followed by having/having had epilepsy (OR 2.0; P = .026), female gender (OR 1.4; P less than .001), and living with a single parent (OR 1.3; P = .019).

The study was funded by the Norwegian Institute of Public Health. Dr. Alfstad said she had no relevant financial disclosures.

[email protected]

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Major Finding: Compared with their healthy peers, a higher proportion of youth with epilepsy reported that they felt lonely (10.7% vs. 5.5%). On multivariate analysis, the two strongest predictors of feeling lonely were low family income (odds ratio 2.3; P less than .001) and having/having had epilepsy (OR 2.0; P = .026).

Data Source: A study of 10,571 Norwegian youth who were asked in 2002 to describe their feelings concerning social relationships.

Disclosures: The study was funded by the Norwegian Institute of Public Health. Dr. Alfstad said she had no relevant financial disclosures.

Neurologic impairment before epilepsy affects long-term outcomes

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SAN DIEGO – Prior neural impairment is the only independent predictor of long-term epilepsy and major cognitive and motor impairments following convulsive status epilepticus in children, researchers reported at the annual meeting of the American Epilepsy Society.

Investigators with the North London Status Epilepticus in Childhood Surveillance Study assessed 126 children a median of 8.5 years following convulsive status epilepticus (CSE) at a median age of 3.6 years.

Among children with prior neurologic impairment, the odds ratio for active epilepsy at follow-up was 7.1 (95% confidence interval, 1.8-27.7), for cognitive impairment, 16.3 (95% CI, 4.3-61.1), and for motor impairment, 9.8 (95% CI, 3.0-31.2).

Dr. Richard Chin

Outcomes were not predicted by the duration of the original attack or by whether it was focal or generalized or continuous or intermittent.

Overall, "if you have good neurologic development before status, your outcome is going to be very good," said senior investigator Dr. Richard Chin, director of the epilepsy center at the University of Edinburgh.

That’s often the case with pediatric febrile seizures, the most common cause of pediatric CSE. True to the point, none of the 30 children who entered the study following febrile seizures had active epilepsy or major motor impairments at follow-up; one child with a subsequent autism diagnosis had major cognitive impairment. MRIs were normal in 28 of the children; one child had evidence of neurofibromatosis and another had a unilateral hippocampal volume reduction without signal change.

Although prolonged febrile seizures have long been thought to be a significant risk factor for subsequent mesial temporal sclerosis (MTS), "we didn’t find evidence of that. None of our children with prolonged febrile seizures developed MTS. The relationship between febrile seizures and subsequent mesial temporal sclerosis is not as strong as once believed," Dr. Chin said.

The 51 children who entered the study with remote symptomatic CSE had previous diagnoses of cerebral palsy, hypoxic brain injury, and other problems; 48 (94%) had active epilepsy, 32 (63%) had major motor deficits, and 37 (73%) had major cognitive impairments at follow-up.

Seventeen children had suffered acute symptomatic CSE attacks; only one had active epilepsy and major cognitive impairment at follow-up. MRIs in a child whose attack was brought on by pneumococcal meningitis suggested left MTS.

Most of the rest of the children in the study were classified as having had an idiopathic or cryptogenic CSE attack – the majority had active epilepsy at follow-up and major motor or cognitive impairments.

Dr. Chin said that he had no disclosures.

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SAN DIEGO – Prior neural impairment is the only independent predictor of long-term epilepsy and major cognitive and motor impairments following convulsive status epilepticus in children, researchers reported at the annual meeting of the American Epilepsy Society.

Investigators with the North London Status Epilepticus in Childhood Surveillance Study assessed 126 children a median of 8.5 years following convulsive status epilepticus (CSE) at a median age of 3.6 years.

Among children with prior neurologic impairment, the odds ratio for active epilepsy at follow-up was 7.1 (95% confidence interval, 1.8-27.7), for cognitive impairment, 16.3 (95% CI, 4.3-61.1), and for motor impairment, 9.8 (95% CI, 3.0-31.2).

Dr. Richard Chin

Outcomes were not predicted by the duration of the original attack or by whether it was focal or generalized or continuous or intermittent.

Overall, "if you have good neurologic development before status, your outcome is going to be very good," said senior investigator Dr. Richard Chin, director of the epilepsy center at the University of Edinburgh.

That’s often the case with pediatric febrile seizures, the most common cause of pediatric CSE. True to the point, none of the 30 children who entered the study following febrile seizures had active epilepsy or major motor impairments at follow-up; one child with a subsequent autism diagnosis had major cognitive impairment. MRIs were normal in 28 of the children; one child had evidence of neurofibromatosis and another had a unilateral hippocampal volume reduction without signal change.

Although prolonged febrile seizures have long been thought to be a significant risk factor for subsequent mesial temporal sclerosis (MTS), "we didn’t find evidence of that. None of our children with prolonged febrile seizures developed MTS. The relationship between febrile seizures and subsequent mesial temporal sclerosis is not as strong as once believed," Dr. Chin said.

The 51 children who entered the study with remote symptomatic CSE had previous diagnoses of cerebral palsy, hypoxic brain injury, and other problems; 48 (94%) had active epilepsy, 32 (63%) had major motor deficits, and 37 (73%) had major cognitive impairments at follow-up.

Seventeen children had suffered acute symptomatic CSE attacks; only one had active epilepsy and major cognitive impairment at follow-up. MRIs in a child whose attack was brought on by pneumococcal meningitis suggested left MTS.

Most of the rest of the children in the study were classified as having had an idiopathic or cryptogenic CSE attack – the majority had active epilepsy at follow-up and major motor or cognitive impairments.

Dr. Chin said that he had no disclosures.

SAN DIEGO – Prior neural impairment is the only independent predictor of long-term epilepsy and major cognitive and motor impairments following convulsive status epilepticus in children, researchers reported at the annual meeting of the American Epilepsy Society.

Investigators with the North London Status Epilepticus in Childhood Surveillance Study assessed 126 children a median of 8.5 years following convulsive status epilepticus (CSE) at a median age of 3.6 years.

Among children with prior neurologic impairment, the odds ratio for active epilepsy at follow-up was 7.1 (95% confidence interval, 1.8-27.7), for cognitive impairment, 16.3 (95% CI, 4.3-61.1), and for motor impairment, 9.8 (95% CI, 3.0-31.2).

Dr. Richard Chin

Outcomes were not predicted by the duration of the original attack or by whether it was focal or generalized or continuous or intermittent.

Overall, "if you have good neurologic development before status, your outcome is going to be very good," said senior investigator Dr. Richard Chin, director of the epilepsy center at the University of Edinburgh.

That’s often the case with pediatric febrile seizures, the most common cause of pediatric CSE. True to the point, none of the 30 children who entered the study following febrile seizures had active epilepsy or major motor impairments at follow-up; one child with a subsequent autism diagnosis had major cognitive impairment. MRIs were normal in 28 of the children; one child had evidence of neurofibromatosis and another had a unilateral hippocampal volume reduction without signal change.

Although prolonged febrile seizures have long been thought to be a significant risk factor for subsequent mesial temporal sclerosis (MTS), "we didn’t find evidence of that. None of our children with prolonged febrile seizures developed MTS. The relationship between febrile seizures and subsequent mesial temporal sclerosis is not as strong as once believed," Dr. Chin said.

The 51 children who entered the study with remote symptomatic CSE had previous diagnoses of cerebral palsy, hypoxic brain injury, and other problems; 48 (94%) had active epilepsy, 32 (63%) had major motor deficits, and 37 (73%) had major cognitive impairments at follow-up.

Seventeen children had suffered acute symptomatic CSE attacks; only one had active epilepsy and major cognitive impairment at follow-up. MRIs in a child whose attack was brought on by pneumococcal meningitis suggested left MTS.

Most of the rest of the children in the study were classified as having had an idiopathic or cryptogenic CSE attack – the majority had active epilepsy at follow-up and major motor or cognitive impairments.

Dr. Chin said that he had no disclosures.

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Major Finding: Among children with convulsive status epilepticus and prior neurologic impairment, the odds ratio for active epilepsy at long-term follow-up is 7.1 (95% CI, 1.8-27.7), for cognitive impairment, 16.3 (95% CI, 4.3-61.1), and for motor impairment, 9.8 (95% CI, 3.0-31.2).

Data Source: Assessment of 126 children a median of 8.5 years following convulsive status epilepticus.

Disclosures: Dr. Chin said that he had no disclosures.

Intervention for epilepsy patients helped prevent depression

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SAN DIEGO – A home-based intervention that incorporated components of mindfulness and cognitive-behavioral therapy led to the prevention of depression, a reduction in seizures, and increased life satisfaction, a randomized study of patients with epilepsy demonstrated.

"Reports are that 32%-48% of people with epilepsy experience depression," Nancy J. Thompson, Ph.D., said at the annual meeting of the American Epilepsy Society. "We know clinically that people with epilepsy may avoid antidepressants because of their epilepsy medications, but at the same time psychotherapy attendance is limited by driving restrictions, so a great number of people with epilepsy and depression go untreated."

Nancy J. Thompson, Ph.D.

The intervention, known as Project UPLIFT, was created at Emory University with funding from the Centers for Disease Control and Prevention as a home-based intervention to address depression in people with epilepsy. The acronym stands for Using Practice, which is a reference to mindfulness, and Learning to Increase Favorable Thoughts, which is a reference to cognitive-behavioral therapy (CBT).

"CBT teaches people to notice how their thoughts and their mood are related and to challenge and in some cases change their thoughts," said Dr. Thompson, a psychologist with the Rollins School of Public Health at Emory University, Atlanta, who helped originate the intervention. "Mindfulness-based cognitive therapy takes it a step further and teaches people to let thoughts pass, which is a little bit less of a cognitive burden and part of why we chose to use mindfulness-based cognitive therapy."

UPLIFT is delivered to groups of seven people by Web or by telephone over the course of eight hour-long sessions. "In our initial study, both the Web and telephone were more effective than treatment as usual in reducing symptoms of depression for people with epilepsy," Dr. Thompson said.

For the current analysis, which was funded by the National Institute on Minority Health and Health Disparities, the researchers recruited 130 patients from clinics at Emory; the University of Michigan, Ann Arbor; the University of Texas Health Science Center, Houston; and the University of Washington, Seattle. The intervention was delivered from Emory by trainees in the mental health program and cofacilitated by a person with epilepsy. Dr. Thompson supervised all of the sessions.

"We randomized people to the intervention or to the treatment-as-usual condition," she said. "Then we allowed them to choose their preferred means of delivery. Everyone got the intervention at some point in time."

Dr. Thompson presented results from 108 patients: 52 in the intervention group and 56 in the treatment-as-usual group. Study participants were adults with epilepsy who had been diagnosed for at least 3 months. They had mild to moderate symptoms of depression but did not meet criteria for major depressive disorder. They had no suicidal ideation and were mentally stable. The measures of interest included knowledge and skills gained in the program, their coping self-efficacy, and their self-compassion. The outcomes evaluated were depression based on the modified Beck Depression Inventory (mBDI), the Patient Health Questionnaire–9 (PHQ-9), and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E); seizures based on the self-reported number of seizures and the Liverpool Seizure Severity Scale, and quality of life as measured by the Short Form 36 Physical and Mental QOL and the Satisfaction With Life Scale.

Dr. Thompson reported that 11% in the treatment-as-usual group developed major depressive disorder compared with none in the intervention group (P = .028). Compared with their counterparts in the treatment-as-usual group, those in the intervention group also had better scores on the mBDI (P = .005), the PHQ-9 (P = .049), knowledge/skills (P = .043), the Satisfaction With Life Scale (P = .006), seizure severity (P = .10), and the number of seizures (P = .025).

The researchers observed a dose-response relationship between the number of sessions attended and the mean change in depression, number of seizures, knowledge and skills, and satisfaction with life. "All other measures changed in the expected direction, although they did not achieve significance," she said. "The effects were maintained over the 8 weeks of follow-up."

The intervention "constituted a leap forward in the delivery of depression treatment," Dr. Thompson concluded. "It reaches those whose mobility is impaired by disability, or even the fatigue and loss of energy associated with depression. It also reaches people in rural or otherwise hard-to-reach areas. Those with specific conditions who live far apart can be brought together in a group to connect and share experiences."

She also noted that the study demonstrates the efficacy of UPLIFT as a preventive intervention. It "averts disability and lost productivity from depression, eliminates tangible and intangible costs of treating depression, and provides participants with skills to manage future stress and difficult life circumstances."

 

 

The cost effectiveness of the intervention will be a focus of future analyses, she said.

Dr. Thompson said she had no relevant financial disclosures.

[email protected]

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SAN DIEGO – A home-based intervention that incorporated components of mindfulness and cognitive-behavioral therapy led to the prevention of depression, a reduction in seizures, and increased life satisfaction, a randomized study of patients with epilepsy demonstrated.

"Reports are that 32%-48% of people with epilepsy experience depression," Nancy J. Thompson, Ph.D., said at the annual meeting of the American Epilepsy Society. "We know clinically that people with epilepsy may avoid antidepressants because of their epilepsy medications, but at the same time psychotherapy attendance is limited by driving restrictions, so a great number of people with epilepsy and depression go untreated."

Nancy J. Thompson, Ph.D.

The intervention, known as Project UPLIFT, was created at Emory University with funding from the Centers for Disease Control and Prevention as a home-based intervention to address depression in people with epilepsy. The acronym stands for Using Practice, which is a reference to mindfulness, and Learning to Increase Favorable Thoughts, which is a reference to cognitive-behavioral therapy (CBT).

"CBT teaches people to notice how their thoughts and their mood are related and to challenge and in some cases change their thoughts," said Dr. Thompson, a psychologist with the Rollins School of Public Health at Emory University, Atlanta, who helped originate the intervention. "Mindfulness-based cognitive therapy takes it a step further and teaches people to let thoughts pass, which is a little bit less of a cognitive burden and part of why we chose to use mindfulness-based cognitive therapy."

UPLIFT is delivered to groups of seven people by Web or by telephone over the course of eight hour-long sessions. "In our initial study, both the Web and telephone were more effective than treatment as usual in reducing symptoms of depression for people with epilepsy," Dr. Thompson said.

For the current analysis, which was funded by the National Institute on Minority Health and Health Disparities, the researchers recruited 130 patients from clinics at Emory; the University of Michigan, Ann Arbor; the University of Texas Health Science Center, Houston; and the University of Washington, Seattle. The intervention was delivered from Emory by trainees in the mental health program and cofacilitated by a person with epilepsy. Dr. Thompson supervised all of the sessions.

"We randomized people to the intervention or to the treatment-as-usual condition," she said. "Then we allowed them to choose their preferred means of delivery. Everyone got the intervention at some point in time."

Dr. Thompson presented results from 108 patients: 52 in the intervention group and 56 in the treatment-as-usual group. Study participants were adults with epilepsy who had been diagnosed for at least 3 months. They had mild to moderate symptoms of depression but did not meet criteria for major depressive disorder. They had no suicidal ideation and were mentally stable. The measures of interest included knowledge and skills gained in the program, their coping self-efficacy, and their self-compassion. The outcomes evaluated were depression based on the modified Beck Depression Inventory (mBDI), the Patient Health Questionnaire–9 (PHQ-9), and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E); seizures based on the self-reported number of seizures and the Liverpool Seizure Severity Scale, and quality of life as measured by the Short Form 36 Physical and Mental QOL and the Satisfaction With Life Scale.

Dr. Thompson reported that 11% in the treatment-as-usual group developed major depressive disorder compared with none in the intervention group (P = .028). Compared with their counterparts in the treatment-as-usual group, those in the intervention group also had better scores on the mBDI (P = .005), the PHQ-9 (P = .049), knowledge/skills (P = .043), the Satisfaction With Life Scale (P = .006), seizure severity (P = .10), and the number of seizures (P = .025).

The researchers observed a dose-response relationship between the number of sessions attended and the mean change in depression, number of seizures, knowledge and skills, and satisfaction with life. "All other measures changed in the expected direction, although they did not achieve significance," she said. "The effects were maintained over the 8 weeks of follow-up."

The intervention "constituted a leap forward in the delivery of depression treatment," Dr. Thompson concluded. "It reaches those whose mobility is impaired by disability, or even the fatigue and loss of energy associated with depression. It also reaches people in rural or otherwise hard-to-reach areas. Those with specific conditions who live far apart can be brought together in a group to connect and share experiences."

She also noted that the study demonstrates the efficacy of UPLIFT as a preventive intervention. It "averts disability and lost productivity from depression, eliminates tangible and intangible costs of treating depression, and provides participants with skills to manage future stress and difficult life circumstances."

 

 

The cost effectiveness of the intervention will be a focus of future analyses, she said.

Dr. Thompson said she had no relevant financial disclosures.

[email protected]

SAN DIEGO – A home-based intervention that incorporated components of mindfulness and cognitive-behavioral therapy led to the prevention of depression, a reduction in seizures, and increased life satisfaction, a randomized study of patients with epilepsy demonstrated.

"Reports are that 32%-48% of people with epilepsy experience depression," Nancy J. Thompson, Ph.D., said at the annual meeting of the American Epilepsy Society. "We know clinically that people with epilepsy may avoid antidepressants because of their epilepsy medications, but at the same time psychotherapy attendance is limited by driving restrictions, so a great number of people with epilepsy and depression go untreated."

Nancy J. Thompson, Ph.D.

The intervention, known as Project UPLIFT, was created at Emory University with funding from the Centers for Disease Control and Prevention as a home-based intervention to address depression in people with epilepsy. The acronym stands for Using Practice, which is a reference to mindfulness, and Learning to Increase Favorable Thoughts, which is a reference to cognitive-behavioral therapy (CBT).

"CBT teaches people to notice how their thoughts and their mood are related and to challenge and in some cases change their thoughts," said Dr. Thompson, a psychologist with the Rollins School of Public Health at Emory University, Atlanta, who helped originate the intervention. "Mindfulness-based cognitive therapy takes it a step further and teaches people to let thoughts pass, which is a little bit less of a cognitive burden and part of why we chose to use mindfulness-based cognitive therapy."

UPLIFT is delivered to groups of seven people by Web or by telephone over the course of eight hour-long sessions. "In our initial study, both the Web and telephone were more effective than treatment as usual in reducing symptoms of depression for people with epilepsy," Dr. Thompson said.

For the current analysis, which was funded by the National Institute on Minority Health and Health Disparities, the researchers recruited 130 patients from clinics at Emory; the University of Michigan, Ann Arbor; the University of Texas Health Science Center, Houston; and the University of Washington, Seattle. The intervention was delivered from Emory by trainees in the mental health program and cofacilitated by a person with epilepsy. Dr. Thompson supervised all of the sessions.

"We randomized people to the intervention or to the treatment-as-usual condition," she said. "Then we allowed them to choose their preferred means of delivery. Everyone got the intervention at some point in time."

Dr. Thompson presented results from 108 patients: 52 in the intervention group and 56 in the treatment-as-usual group. Study participants were adults with epilepsy who had been diagnosed for at least 3 months. They had mild to moderate symptoms of depression but did not meet criteria for major depressive disorder. They had no suicidal ideation and were mentally stable. The measures of interest included knowledge and skills gained in the program, their coping self-efficacy, and their self-compassion. The outcomes evaluated were depression based on the modified Beck Depression Inventory (mBDI), the Patient Health Questionnaire–9 (PHQ-9), and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E); seizures based on the self-reported number of seizures and the Liverpool Seizure Severity Scale, and quality of life as measured by the Short Form 36 Physical and Mental QOL and the Satisfaction With Life Scale.

Dr. Thompson reported that 11% in the treatment-as-usual group developed major depressive disorder compared with none in the intervention group (P = .028). Compared with their counterparts in the treatment-as-usual group, those in the intervention group also had better scores on the mBDI (P = .005), the PHQ-9 (P = .049), knowledge/skills (P = .043), the Satisfaction With Life Scale (P = .006), seizure severity (P = .10), and the number of seizures (P = .025).

The researchers observed a dose-response relationship between the number of sessions attended and the mean change in depression, number of seizures, knowledge and skills, and satisfaction with life. "All other measures changed in the expected direction, although they did not achieve significance," she said. "The effects were maintained over the 8 weeks of follow-up."

The intervention "constituted a leap forward in the delivery of depression treatment," Dr. Thompson concluded. "It reaches those whose mobility is impaired by disability, or even the fatigue and loss of energy associated with depression. It also reaches people in rural or otherwise hard-to-reach areas. Those with specific conditions who live far apart can be brought together in a group to connect and share experiences."

She also noted that the study demonstrates the efficacy of UPLIFT as a preventive intervention. It "averts disability and lost productivity from depression, eliminates tangible and intangible costs of treating depression, and provides participants with skills to manage future stress and difficult life circumstances."

 

 

The cost effectiveness of the intervention will be a focus of future analyses, she said.

Dr. Thompson said she had no relevant financial disclosures.

[email protected]

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Major Finding: Among adults with epilepsy who were randomized to a home-based intervention that incorporated components of mindfulness and cognitive-behavioral therapy delivered over the course of eight hour-long sessions, none developed major depressive disorder, compared with 11% in the treatment-as-usual group (P =.028).

Data Source: A randomized trial of 108 patients conducted at four epilepsy centers in the United States.

Disclosures: The study was funded by the National Institute on Minority Health and Health Disparities.

Parents say epilepsy sudden death discussion is necessary

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SAN DIEGO – Parents want to know that epilepsy can rarely prove fatal to children who have the condition, according to researchers from McMaster University in Hamilton, Ont.

It’s long been debated whether to tell parents of the risk of sudden unexplained death in epilepsy (SUDEP). It’s so rare – perhaps 2-4 cases per 10,000 patient-years in children – that clinicians often hold off sharing the information for fear of needlessly upsetting parents, said lead investigator Dr. Rajesh RamachandranNair.

Dr. Rajesh RamachandranNair

It turns out that parents do want to know. During focus group interviews of 36 parents (15 men and 21 women) of 21 children with mild to severe epilepsy, and one-on-one interviews with 6 parents (2 men and 4 women) who lost 4 children to the condition, parents agreed "unanimously that they wanted to hear about SUDEP," said Dr. RamachandranNair, a pediatric neurologist and epileptologist at McMaster.

"Half of them wanted to know about SUDEP at the diagnosis of epilepsy. The rest thought that there’s a lot of information already at the first visit, so they wanted to hear about SUDEP at the first follow-up visit," he said.

There’s a benefit to telling them. Intractable epilepsy, young adulthood, and male gender are risk factors; awareness among parents – and young adults – that epilepsy can be fatal, especially in those groups, may lead to better treatment compliance, Dr. RamachandranNair said at the annual meeting of the American Epilepsy Society.

Parents are also likely to search the Internet after epilepsy is diagnosed, find out about SUDEP, and overestimate the risk. News that it’s a rare and unlikely occurrence will bring relief, he said.

In his study, 26 (62%) parents had heard about SUDEP and overestimated the risk. They "were emphatic" that they didn’t want to first hear about SUDEP from a pamphlet or an Internet website, but from face-to-face talks with a pediatric neurologist able to answer their questions.

They also wanted to be able to discuss SUDEP with nurses or social workers during follow-up visits, and have written information with credible Web references. Parents also wanted the decision of when to tell their child about the possibility left up to them.

In general, it’s best to bring up SUDEP in the outpatient setting. In the back of every parent’s mind is the possibility that their child might die during a seizure. They’ll probably reveal that concern with subtle clues; they might cry in the exam room or ask if their child will swallow their tongue during a seizure. That’s the time to probe further, and share the true risk of dying from a seizure, he said.

Dr. RamachandranNair said he had no relevant financial disclosures.

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SAN DIEGO – Parents want to know that epilepsy can rarely prove fatal to children who have the condition, according to researchers from McMaster University in Hamilton, Ont.

It’s long been debated whether to tell parents of the risk of sudden unexplained death in epilepsy (SUDEP). It’s so rare – perhaps 2-4 cases per 10,000 patient-years in children – that clinicians often hold off sharing the information for fear of needlessly upsetting parents, said lead investigator Dr. Rajesh RamachandranNair.

Dr. Rajesh RamachandranNair

It turns out that parents do want to know. During focus group interviews of 36 parents (15 men and 21 women) of 21 children with mild to severe epilepsy, and one-on-one interviews with 6 parents (2 men and 4 women) who lost 4 children to the condition, parents agreed "unanimously that they wanted to hear about SUDEP," said Dr. RamachandranNair, a pediatric neurologist and epileptologist at McMaster.

"Half of them wanted to know about SUDEP at the diagnosis of epilepsy. The rest thought that there’s a lot of information already at the first visit, so they wanted to hear about SUDEP at the first follow-up visit," he said.

There’s a benefit to telling them. Intractable epilepsy, young adulthood, and male gender are risk factors; awareness among parents – and young adults – that epilepsy can be fatal, especially in those groups, may lead to better treatment compliance, Dr. RamachandranNair said at the annual meeting of the American Epilepsy Society.

Parents are also likely to search the Internet after epilepsy is diagnosed, find out about SUDEP, and overestimate the risk. News that it’s a rare and unlikely occurrence will bring relief, he said.

In his study, 26 (62%) parents had heard about SUDEP and overestimated the risk. They "were emphatic" that they didn’t want to first hear about SUDEP from a pamphlet or an Internet website, but from face-to-face talks with a pediatric neurologist able to answer their questions.

They also wanted to be able to discuss SUDEP with nurses or social workers during follow-up visits, and have written information with credible Web references. Parents also wanted the decision of when to tell their child about the possibility left up to them.

In general, it’s best to bring up SUDEP in the outpatient setting. In the back of every parent’s mind is the possibility that their child might die during a seizure. They’ll probably reveal that concern with subtle clues; they might cry in the exam room or ask if their child will swallow their tongue during a seizure. That’s the time to probe further, and share the true risk of dying from a seizure, he said.

Dr. RamachandranNair said he had no relevant financial disclosures.

SAN DIEGO – Parents want to know that epilepsy can rarely prove fatal to children who have the condition, according to researchers from McMaster University in Hamilton, Ont.

It’s long been debated whether to tell parents of the risk of sudden unexplained death in epilepsy (SUDEP). It’s so rare – perhaps 2-4 cases per 10,000 patient-years in children – that clinicians often hold off sharing the information for fear of needlessly upsetting parents, said lead investigator Dr. Rajesh RamachandranNair.

Dr. Rajesh RamachandranNair

It turns out that parents do want to know. During focus group interviews of 36 parents (15 men and 21 women) of 21 children with mild to severe epilepsy, and one-on-one interviews with 6 parents (2 men and 4 women) who lost 4 children to the condition, parents agreed "unanimously that they wanted to hear about SUDEP," said Dr. RamachandranNair, a pediatric neurologist and epileptologist at McMaster.

"Half of them wanted to know about SUDEP at the diagnosis of epilepsy. The rest thought that there’s a lot of information already at the first visit, so they wanted to hear about SUDEP at the first follow-up visit," he said.

There’s a benefit to telling them. Intractable epilepsy, young adulthood, and male gender are risk factors; awareness among parents – and young adults – that epilepsy can be fatal, especially in those groups, may lead to better treatment compliance, Dr. RamachandranNair said at the annual meeting of the American Epilepsy Society.

Parents are also likely to search the Internet after epilepsy is diagnosed, find out about SUDEP, and overestimate the risk. News that it’s a rare and unlikely occurrence will bring relief, he said.

In his study, 26 (62%) parents had heard about SUDEP and overestimated the risk. They "were emphatic" that they didn’t want to first hear about SUDEP from a pamphlet or an Internet website, but from face-to-face talks with a pediatric neurologist able to answer their questions.

They also wanted to be able to discuss SUDEP with nurses or social workers during follow-up visits, and have written information with credible Web references. Parents also wanted the decision of when to tell their child about the possibility left up to them.

In general, it’s best to bring up SUDEP in the outpatient setting. In the back of every parent’s mind is the possibility that their child might die during a seizure. They’ll probably reveal that concern with subtle clues; they might cry in the exam room or ask if their child will swallow their tongue during a seizure. That’s the time to probe further, and share the true risk of dying from a seizure, he said.

Dr. RamachandranNair said he had no relevant financial disclosures.

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Major Finding: Parents of children with epilepsy unanimously agreed that they want to know about the risk of sudden unexplained death in epilepsy.

Data Source: Focus group and individual interviews of 42 parents of children with epilepsy.

Disclosures: Dr. RamachandranNair said he had no relevant financial disclosures.

Medicaid population burdened by epilepsy

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SAN DIEGO – People on Medicaid have a high incidence and prevalence of epilepsy, in an order of magnitude greater than that reported in the U.S. general population, results from a large analysis demonstrated.

This indigent population "carries a disproportionate amount of the epilepsy burden and therefore deserves more attention for their health care needs and support services," Dr. Kitti Kaiboriboon said in an interview at the annual meeting of the American Epilepsy Society, where the work was presented.

Dr. Kitti Kaiboriboon

Few studies have shown that people with low socioeconomic status have a higher incidence and prevalence of epilepsy than their counterparts with high socioeconomic status, said Dr. Kaiboriboon, a neurologist in the epilepsy center at University Hospitals Case Medical Center, Cleveland.

"However, no study, to our knowledge, has specifically examined the incidence and/or prevalence of epilepsy in the Medicaid population, which are among the sickest and the poorest group of people in the United States," he said. "They have [a] high incidence and prevalence of chronic medical conditions, some of which are risk factors for epilepsy. The incidence and prevalence of epilepsy in this population are very important for public health planning."

The incidence and prevalence of epilepsy in the general population vary from study to study, he said, but the incidence of epilepsy in the United States usually ranges between 15 and 71/100,000 person-years, while the prevalence usually ranges between 5 and 9/1,000 persons.

Dr. Kaiboriboon and his associates obtained Ohio Medicaid claims data for adults between 1992 and 2006 to identify prevalent and incident cases of epilepsy. Prevalent cases of epilepsy were defined as those that had two or more claims of epilepsy or three or more claims of convulsion and two or more claims of antiepileptic drugs. Each of the diagnosis or pharmacy claims had to be more than 30 days apart. Incident cases of epilepsy were required to have no epilepsy or convulsion claims for at least 5 years before epilepsy was diagnosed. The researchers also determined which subjects had a preexisting disability and/or comorbid conditions including brain tumor, depression, developmental disorders, migraine, schizophrenia, stroke, and traumatic brain injury when at least one of these conditions occurred prior to the onset of epilepsy.

Dr. Kaiboriboon presented findings from 9,056 prevalent cases and 1,608 incident cases of epilepsy. The incidence of epilepsy in the Medicaid population was 360/ 100,000 person-years. "There are about 60 million people in the Medicaid population; you would expect to have 216,000 new cases of epilepsy each year," he said. "We found that the prevalence of epilepsy was 13.2/1,000 persons, which means that there are 792,000 Medicaid beneficiaries with epilepsy," he said. "This is huge."

The researchers found that the majority of Medicaid beneficiaries with epilepsy have preexisting medical and/or psychological conditions, with the most common being depression (773 cases), developmental disorders (436 cases), and stroke (422 cases). They also found that among people with preexisting conditions, people with brain tumor, traumatic brain injury, and stroke have the highest risk of developing epilepsy (risks of 78%, 76%, and 70%, respectively).

Dr. Kaiboriboon acknowledged certain limitations of the study, including the fact that it relied on Medicaid claims data to obtain the incidence and prevalence of epilepsy. "The case ascertainment, therefore, was mainly based on diagnosis codes," he said. "We, however, used very stringent criteria to identify subjects with epilepsy. Also, subjects who in fact had epilepsy but were not actively taking AEDs [antiepileptic drugs] would not be included in the analysis. Because of this, our incidence and prevalence are the estimates for ‘treated’ epilepsy."

The study was funded by the Epilepsy Foundation and by a grant from the National Center for Research Resources. Dr. Kaiboriboon said he had no relevant financial conflicts to disclose.

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SAN DIEGO – People on Medicaid have a high incidence and prevalence of epilepsy, in an order of magnitude greater than that reported in the U.S. general population, results from a large analysis demonstrated.

This indigent population "carries a disproportionate amount of the epilepsy burden and therefore deserves more attention for their health care needs and support services," Dr. Kitti Kaiboriboon said in an interview at the annual meeting of the American Epilepsy Society, where the work was presented.

Dr. Kitti Kaiboriboon

Few studies have shown that people with low socioeconomic status have a higher incidence and prevalence of epilepsy than their counterparts with high socioeconomic status, said Dr. Kaiboriboon, a neurologist in the epilepsy center at University Hospitals Case Medical Center, Cleveland.

"However, no study, to our knowledge, has specifically examined the incidence and/or prevalence of epilepsy in the Medicaid population, which are among the sickest and the poorest group of people in the United States," he said. "They have [a] high incidence and prevalence of chronic medical conditions, some of which are risk factors for epilepsy. The incidence and prevalence of epilepsy in this population are very important for public health planning."

The incidence and prevalence of epilepsy in the general population vary from study to study, he said, but the incidence of epilepsy in the United States usually ranges between 15 and 71/100,000 person-years, while the prevalence usually ranges between 5 and 9/1,000 persons.

Dr. Kaiboriboon and his associates obtained Ohio Medicaid claims data for adults between 1992 and 2006 to identify prevalent and incident cases of epilepsy. Prevalent cases of epilepsy were defined as those that had two or more claims of epilepsy or three or more claims of convulsion and two or more claims of antiepileptic drugs. Each of the diagnosis or pharmacy claims had to be more than 30 days apart. Incident cases of epilepsy were required to have no epilepsy or convulsion claims for at least 5 years before epilepsy was diagnosed. The researchers also determined which subjects had a preexisting disability and/or comorbid conditions including brain tumor, depression, developmental disorders, migraine, schizophrenia, stroke, and traumatic brain injury when at least one of these conditions occurred prior to the onset of epilepsy.

Dr. Kaiboriboon presented findings from 9,056 prevalent cases and 1,608 incident cases of epilepsy. The incidence of epilepsy in the Medicaid population was 360/ 100,000 person-years. "There are about 60 million people in the Medicaid population; you would expect to have 216,000 new cases of epilepsy each year," he said. "We found that the prevalence of epilepsy was 13.2/1,000 persons, which means that there are 792,000 Medicaid beneficiaries with epilepsy," he said. "This is huge."

The researchers found that the majority of Medicaid beneficiaries with epilepsy have preexisting medical and/or psychological conditions, with the most common being depression (773 cases), developmental disorders (436 cases), and stroke (422 cases). They also found that among people with preexisting conditions, people with brain tumor, traumatic brain injury, and stroke have the highest risk of developing epilepsy (risks of 78%, 76%, and 70%, respectively).

Dr. Kaiboriboon acknowledged certain limitations of the study, including the fact that it relied on Medicaid claims data to obtain the incidence and prevalence of epilepsy. "The case ascertainment, therefore, was mainly based on diagnosis codes," he said. "We, however, used very stringent criteria to identify subjects with epilepsy. Also, subjects who in fact had epilepsy but were not actively taking AEDs [antiepileptic drugs] would not be included in the analysis. Because of this, our incidence and prevalence are the estimates for ‘treated’ epilepsy."

The study was funded by the Epilepsy Foundation and by a grant from the National Center for Research Resources. Dr. Kaiboriboon said he had no relevant financial conflicts to disclose.

[email protected]

SAN DIEGO – People on Medicaid have a high incidence and prevalence of epilepsy, in an order of magnitude greater than that reported in the U.S. general population, results from a large analysis demonstrated.

This indigent population "carries a disproportionate amount of the epilepsy burden and therefore deserves more attention for their health care needs and support services," Dr. Kitti Kaiboriboon said in an interview at the annual meeting of the American Epilepsy Society, where the work was presented.

Dr. Kitti Kaiboriboon

Few studies have shown that people with low socioeconomic status have a higher incidence and prevalence of epilepsy than their counterparts with high socioeconomic status, said Dr. Kaiboriboon, a neurologist in the epilepsy center at University Hospitals Case Medical Center, Cleveland.

"However, no study, to our knowledge, has specifically examined the incidence and/or prevalence of epilepsy in the Medicaid population, which are among the sickest and the poorest group of people in the United States," he said. "They have [a] high incidence and prevalence of chronic medical conditions, some of which are risk factors for epilepsy. The incidence and prevalence of epilepsy in this population are very important for public health planning."

The incidence and prevalence of epilepsy in the general population vary from study to study, he said, but the incidence of epilepsy in the United States usually ranges between 15 and 71/100,000 person-years, while the prevalence usually ranges between 5 and 9/1,000 persons.

Dr. Kaiboriboon and his associates obtained Ohio Medicaid claims data for adults between 1992 and 2006 to identify prevalent and incident cases of epilepsy. Prevalent cases of epilepsy were defined as those that had two or more claims of epilepsy or three or more claims of convulsion and two or more claims of antiepileptic drugs. Each of the diagnosis or pharmacy claims had to be more than 30 days apart. Incident cases of epilepsy were required to have no epilepsy or convulsion claims for at least 5 years before epilepsy was diagnosed. The researchers also determined which subjects had a preexisting disability and/or comorbid conditions including brain tumor, depression, developmental disorders, migraine, schizophrenia, stroke, and traumatic brain injury when at least one of these conditions occurred prior to the onset of epilepsy.

Dr. Kaiboriboon presented findings from 9,056 prevalent cases and 1,608 incident cases of epilepsy. The incidence of epilepsy in the Medicaid population was 360/ 100,000 person-years. "There are about 60 million people in the Medicaid population; you would expect to have 216,000 new cases of epilepsy each year," he said. "We found that the prevalence of epilepsy was 13.2/1,000 persons, which means that there are 792,000 Medicaid beneficiaries with epilepsy," he said. "This is huge."

The researchers found that the majority of Medicaid beneficiaries with epilepsy have preexisting medical and/or psychological conditions, with the most common being depression (773 cases), developmental disorders (436 cases), and stroke (422 cases). They also found that among people with preexisting conditions, people with brain tumor, traumatic brain injury, and stroke have the highest risk of developing epilepsy (risks of 78%, 76%, and 70%, respectively).

Dr. Kaiboriboon acknowledged certain limitations of the study, including the fact that it relied on Medicaid claims data to obtain the incidence and prevalence of epilepsy. "The case ascertainment, therefore, was mainly based on diagnosis codes," he said. "We, however, used very stringent criteria to identify subjects with epilepsy. Also, subjects who in fact had epilepsy but were not actively taking AEDs [antiepileptic drugs] would not be included in the analysis. Because of this, our incidence and prevalence are the estimates for ‘treated’ epilepsy."

The study was funded by the Epilepsy Foundation and by a grant from the National Center for Research Resources. Dr. Kaiboriboon said he had no relevant financial conflicts to disclose.

[email protected]

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AT THE ANNUAL MEETING OF THE AMERICAN EPILEPSY SOCIETY

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Major Finding: The incidence of epilepsy in the Medicaid population was 360/100,000 person-years while the prevalence of epilepsy was 13.2/1,000 persons.

Data Source: A study of 9,056 prevalent and 1,608 incident cases of epilepsy based on Ohio Medicaid claims data from adults between 1992 and 2006.

Disclosures: The study was funded by the Epilepsy Foundation and by a grant from the National Center for Research Resources. Dr. Kaiboriboon said he had no relevant financial conflicts.

Late-life epilepsy diagnosis brings unique challenges

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SAN DIEGO – Adults who are diagnosed with epilepsy at 60 years or older face challenges and perceived negative life changes that are unique from those who are diagnosed at a younger age, especially in terms of managing medications and maintaining independence. The findings come from a qualitative study intended to describe problems and life changes faced by patients who receive an epilepsy diagnosis in later life.

Wendy Miller, Ph.D.

"People aged 60 and older are at the highest risk for new-onset epilepsy," Wendy R. Miller, Ph.D., said in an interview during a poster session at the annual meeting of the American Epilepsy Society. "We’ve only recognized this trend in the last 10-15 years. No one has really studied this population to find out how they cope with epilepsy self-management compared with younger people."

For the study, which was carried out in 2011, Dr. Miller and her colleague, Janice Buelow, Ph.D., interviewed 20 patients who had a diagnosis of epilepsy at or after age 60. Eligibility criteria included having had a diagnosis of epilepsy for at least 6 months, being on at least one antiepileptic medication, and being community dwelling. During face-to-face semi-structured interviews, the researchers asked participants open-ended questions about problems and perceived changes they had experienced since being diagnosed with epilepsy.

Of the 20 patients, 12 were women, mean age was 70 years, and they were a mean of 4.1 years removed from their initial epilepsy diagnosis, according to Dr. Miller of the Indiana University School of Nursing, Indianapolis. Key problem areas reported by the study participants included maintaining independence (40% expressed concerns about transportation while 80% worried about their ability to continue life normally) and medications (95% were concerned about side effects of antiepileptic medications, 60% worried about remembering to take them, and 55% worried about their ability to afford them). "Many of the people interviewed have tight financial concerns," Dr. Miller said. "There were also polypharmacy issues, where people elected not to take their antiepilepsy medication because they perceived that it was not as important as their heart medication."

The majority of negative changes reported by the study participants were related to lifestyle, including impact on daily function (100%), physical and emotional symptoms (100%), impact on the number of commitments made (80%), relationships with family and friends (60%), and their ability to fulfill age-appropriate roles and responsibilities (60%).

While not reported in the abstract, another common concern expressed by study participants was related to the process of being diagnosed with epilepsy. "Many were initially misdiagnosed," Dr. Miller said. "It was really difficult for them to get an accurate diagnosis. I didn’t anticipate that. When I sat down with them for interviews that’s what they wanted to talk about, and that wasn’t even one of my questions. They would go from doctor to doctor, or the doctor would say that the seizures are due to a condition they already have. So they would go long periods of time without being treated."

The top two positive changes related to their epilepsy diagnosis as reported by study participants were perspective (25%) and impact on spirituality (25%). Dr. Miller said that she plans to use the study findings to develop an assessment tool to guide the development and implementation of tailored epilepsy self-management interventions for older adults. "This is a very unique group," Dr. Miller said. "They have unique needs, and they’re a growing segment of the population, so we have to devise interventions that are specific for them."

The study was funded by the National Institutes of Health. Dr. Miller said that she had no relevant financial conflicts to disclose.

[email protected]

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SAN DIEGO – Adults who are diagnosed with epilepsy at 60 years or older face challenges and perceived negative life changes that are unique from those who are diagnosed at a younger age, especially in terms of managing medications and maintaining independence. The findings come from a qualitative study intended to describe problems and life changes faced by patients who receive an epilepsy diagnosis in later life.

Wendy Miller, Ph.D.

"People aged 60 and older are at the highest risk for new-onset epilepsy," Wendy R. Miller, Ph.D., said in an interview during a poster session at the annual meeting of the American Epilepsy Society. "We’ve only recognized this trend in the last 10-15 years. No one has really studied this population to find out how they cope with epilepsy self-management compared with younger people."

For the study, which was carried out in 2011, Dr. Miller and her colleague, Janice Buelow, Ph.D., interviewed 20 patients who had a diagnosis of epilepsy at or after age 60. Eligibility criteria included having had a diagnosis of epilepsy for at least 6 months, being on at least one antiepileptic medication, and being community dwelling. During face-to-face semi-structured interviews, the researchers asked participants open-ended questions about problems and perceived changes they had experienced since being diagnosed with epilepsy.

Of the 20 patients, 12 were women, mean age was 70 years, and they were a mean of 4.1 years removed from their initial epilepsy diagnosis, according to Dr. Miller of the Indiana University School of Nursing, Indianapolis. Key problem areas reported by the study participants included maintaining independence (40% expressed concerns about transportation while 80% worried about their ability to continue life normally) and medications (95% were concerned about side effects of antiepileptic medications, 60% worried about remembering to take them, and 55% worried about their ability to afford them). "Many of the people interviewed have tight financial concerns," Dr. Miller said. "There were also polypharmacy issues, where people elected not to take their antiepilepsy medication because they perceived that it was not as important as their heart medication."

The majority of negative changes reported by the study participants were related to lifestyle, including impact on daily function (100%), physical and emotional symptoms (100%), impact on the number of commitments made (80%), relationships with family and friends (60%), and their ability to fulfill age-appropriate roles and responsibilities (60%).

While not reported in the abstract, another common concern expressed by study participants was related to the process of being diagnosed with epilepsy. "Many were initially misdiagnosed," Dr. Miller said. "It was really difficult for them to get an accurate diagnosis. I didn’t anticipate that. When I sat down with them for interviews that’s what they wanted to talk about, and that wasn’t even one of my questions. They would go from doctor to doctor, or the doctor would say that the seizures are due to a condition they already have. So they would go long periods of time without being treated."

The top two positive changes related to their epilepsy diagnosis as reported by study participants were perspective (25%) and impact on spirituality (25%). Dr. Miller said that she plans to use the study findings to develop an assessment tool to guide the development and implementation of tailored epilepsy self-management interventions for older adults. "This is a very unique group," Dr. Miller said. "They have unique needs, and they’re a growing segment of the population, so we have to devise interventions that are specific for them."

The study was funded by the National Institutes of Health. Dr. Miller said that she had no relevant financial conflicts to disclose.

[email protected]

SAN DIEGO – Adults who are diagnosed with epilepsy at 60 years or older face challenges and perceived negative life changes that are unique from those who are diagnosed at a younger age, especially in terms of managing medications and maintaining independence. The findings come from a qualitative study intended to describe problems and life changes faced by patients who receive an epilepsy diagnosis in later life.

Wendy Miller, Ph.D.

"People aged 60 and older are at the highest risk for new-onset epilepsy," Wendy R. Miller, Ph.D., said in an interview during a poster session at the annual meeting of the American Epilepsy Society. "We’ve only recognized this trend in the last 10-15 years. No one has really studied this population to find out how they cope with epilepsy self-management compared with younger people."

For the study, which was carried out in 2011, Dr. Miller and her colleague, Janice Buelow, Ph.D., interviewed 20 patients who had a diagnosis of epilepsy at or after age 60. Eligibility criteria included having had a diagnosis of epilepsy for at least 6 months, being on at least one antiepileptic medication, and being community dwelling. During face-to-face semi-structured interviews, the researchers asked participants open-ended questions about problems and perceived changes they had experienced since being diagnosed with epilepsy.

Of the 20 patients, 12 were women, mean age was 70 years, and they were a mean of 4.1 years removed from their initial epilepsy diagnosis, according to Dr. Miller of the Indiana University School of Nursing, Indianapolis. Key problem areas reported by the study participants included maintaining independence (40% expressed concerns about transportation while 80% worried about their ability to continue life normally) and medications (95% were concerned about side effects of antiepileptic medications, 60% worried about remembering to take them, and 55% worried about their ability to afford them). "Many of the people interviewed have tight financial concerns," Dr. Miller said. "There were also polypharmacy issues, where people elected not to take their antiepilepsy medication because they perceived that it was not as important as their heart medication."

The majority of negative changes reported by the study participants were related to lifestyle, including impact on daily function (100%), physical and emotional symptoms (100%), impact on the number of commitments made (80%), relationships with family and friends (60%), and their ability to fulfill age-appropriate roles and responsibilities (60%).

While not reported in the abstract, another common concern expressed by study participants was related to the process of being diagnosed with epilepsy. "Many were initially misdiagnosed," Dr. Miller said. "It was really difficult for them to get an accurate diagnosis. I didn’t anticipate that. When I sat down with them for interviews that’s what they wanted to talk about, and that wasn’t even one of my questions. They would go from doctor to doctor, or the doctor would say that the seizures are due to a condition they already have. So they would go long periods of time without being treated."

The top two positive changes related to their epilepsy diagnosis as reported by study participants were perspective (25%) and impact on spirituality (25%). Dr. Miller said that she plans to use the study findings to develop an assessment tool to guide the development and implementation of tailored epilepsy self-management interventions for older adults. "This is a very unique group," Dr. Miller said. "They have unique needs, and they’re a growing segment of the population, so we have to devise interventions that are specific for them."

The study was funded by the National Institutes of Health. Dr. Miller said that she had no relevant financial conflicts to disclose.

[email protected]

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Major Finding: Among older adults with newly diagnosed epilepsy, 40% expressed concerns about transportation and 80% worried about their ability to continue life normally.

Data Source: A qualitative study of 20 patients who were diagnosed with epilepsy at age 60 or older.

Disclosures: The study was funded by the National Institutes of Health. Dr. Miller said that she had no relevant financial conflicts to disclose.

Epilepsy patients embrace supplements

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SAN DIEGO – Just over half of patients with epilepsy routinely take some form of supplements or alternative medications, results from a large single-center study showed.

"Supplement and alternative medicine use in patients with epilepsy is an understudied area of medicine," Dr. Kristen Kelly said in an interview following the annual meeting of the American Epilepsy Society, where the work was presented. "Our study is unique in that it was an anonymous survey, giving patients the freedom to respond without the physicians or anyone else knowing which patient was submitting the response," she said. "Also, this was performed in a large epilepsy clinic in Phoenix, Arizona, where a significant number of Hispanic patients receive care."

©GRAÇA VICTORIA/ISTOCKPHOTO.COM
Multivitamins, calcium, vitamin D, and fish oil are among the most popular supplements epilepsy patients take.

During her neurology residency, Dr. Kelly and her associate, Dr. Steve S. Chung, surveyed 500 consecutive epilepsy patients at the Phoenix-based Barrow Neurological Institute about their supplement use. A majority of patients (87%) completed the survey, which was conducted between February and June 2012.

The duration of epilepsy was less than 1 year in 5% of patients, 1-5 years in 15% of patients, 5-10 years in 15% of patients, and more than 10 years in 65% of patients. Approximately 52% indicated that they took at least one alternative supplement.

A total of 202 respondents listed the specific supplements they used. The average number of supplements per person was 2.7, and the most common were multivitamins (51%), calcium (25%), vitamin D (23%), and fish oil (18%). There were 49 supplements named that were used by five or fewer people, and 33 supplements named that were each used by only one person. "Three patients in the survey listed marijuana as one of their supplements or alternative medication," said Dr. Kelly. "Two of the patients took it because they believed it helped their seizures, and one for reasons not related to the patient’s seizure disorder. I suspect this will become even more common among epilepsy patients in the future."

Dr. Kristen Kelly

The study’s overall findings suggest that clinicians should ask epilepsy patients about their use of supplements or alternative medications, "because even well-recognized, common supplements can affect seizure medications," Dr. Kelly said. "In addition, many patients are taking uncommon supplements that physicians may need to investigate before deciding if the supplements have the potential to affect seizure control or seizure medications."

She acknowledged certain limitations of the study, including its anonymity and single-center design. "This did limit our data acquisition by not being able to review patient charts," she said. "There is also the risk of erroneous information given by a patient during any questionnaire-based study."

The researchers stated that they had no relevant financial conflicts to disclose.

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SAN DIEGO – Just over half of patients with epilepsy routinely take some form of supplements or alternative medications, results from a large single-center study showed.

"Supplement and alternative medicine use in patients with epilepsy is an understudied area of medicine," Dr. Kristen Kelly said in an interview following the annual meeting of the American Epilepsy Society, where the work was presented. "Our study is unique in that it was an anonymous survey, giving patients the freedom to respond without the physicians or anyone else knowing which patient was submitting the response," she said. "Also, this was performed in a large epilepsy clinic in Phoenix, Arizona, where a significant number of Hispanic patients receive care."

©GRAÇA VICTORIA/ISTOCKPHOTO.COM
Multivitamins, calcium, vitamin D, and fish oil are among the most popular supplements epilepsy patients take.

During her neurology residency, Dr. Kelly and her associate, Dr. Steve S. Chung, surveyed 500 consecutive epilepsy patients at the Phoenix-based Barrow Neurological Institute about their supplement use. A majority of patients (87%) completed the survey, which was conducted between February and June 2012.

The duration of epilepsy was less than 1 year in 5% of patients, 1-5 years in 15% of patients, 5-10 years in 15% of patients, and more than 10 years in 65% of patients. Approximately 52% indicated that they took at least one alternative supplement.

A total of 202 respondents listed the specific supplements they used. The average number of supplements per person was 2.7, and the most common were multivitamins (51%), calcium (25%), vitamin D (23%), and fish oil (18%). There were 49 supplements named that were used by five or fewer people, and 33 supplements named that were each used by only one person. "Three patients in the survey listed marijuana as one of their supplements or alternative medication," said Dr. Kelly. "Two of the patients took it because they believed it helped their seizures, and one for reasons not related to the patient’s seizure disorder. I suspect this will become even more common among epilepsy patients in the future."

Dr. Kristen Kelly

The study’s overall findings suggest that clinicians should ask epilepsy patients about their use of supplements or alternative medications, "because even well-recognized, common supplements can affect seizure medications," Dr. Kelly said. "In addition, many patients are taking uncommon supplements that physicians may need to investigate before deciding if the supplements have the potential to affect seizure control or seizure medications."

She acknowledged certain limitations of the study, including its anonymity and single-center design. "This did limit our data acquisition by not being able to review patient charts," she said. "There is also the risk of erroneous information given by a patient during any questionnaire-based study."

The researchers stated that they had no relevant financial conflicts to disclose.

[email protected]

SAN DIEGO – Just over half of patients with epilepsy routinely take some form of supplements or alternative medications, results from a large single-center study showed.

"Supplement and alternative medicine use in patients with epilepsy is an understudied area of medicine," Dr. Kristen Kelly said in an interview following the annual meeting of the American Epilepsy Society, where the work was presented. "Our study is unique in that it was an anonymous survey, giving patients the freedom to respond without the physicians or anyone else knowing which patient was submitting the response," she said. "Also, this was performed in a large epilepsy clinic in Phoenix, Arizona, where a significant number of Hispanic patients receive care."

©GRAÇA VICTORIA/ISTOCKPHOTO.COM
Multivitamins, calcium, vitamin D, and fish oil are among the most popular supplements epilepsy patients take.

During her neurology residency, Dr. Kelly and her associate, Dr. Steve S. Chung, surveyed 500 consecutive epilepsy patients at the Phoenix-based Barrow Neurological Institute about their supplement use. A majority of patients (87%) completed the survey, which was conducted between February and June 2012.

The duration of epilepsy was less than 1 year in 5% of patients, 1-5 years in 15% of patients, 5-10 years in 15% of patients, and more than 10 years in 65% of patients. Approximately 52% indicated that they took at least one alternative supplement.

A total of 202 respondents listed the specific supplements they used. The average number of supplements per person was 2.7, and the most common were multivitamins (51%), calcium (25%), vitamin D (23%), and fish oil (18%). There were 49 supplements named that were used by five or fewer people, and 33 supplements named that were each used by only one person. "Three patients in the survey listed marijuana as one of their supplements or alternative medication," said Dr. Kelly. "Two of the patients took it because they believed it helped their seizures, and one for reasons not related to the patient’s seizure disorder. I suspect this will become even more common among epilepsy patients in the future."

Dr. Kristen Kelly

The study’s overall findings suggest that clinicians should ask epilepsy patients about their use of supplements or alternative medications, "because even well-recognized, common supplements can affect seizure medications," Dr. Kelly said. "In addition, many patients are taking uncommon supplements that physicians may need to investigate before deciding if the supplements have the potential to affect seizure control or seizure medications."

She acknowledged certain limitations of the study, including its anonymity and single-center design. "This did limit our data acquisition by not being able to review patient charts," she said. "There is also the risk of erroneous information given by a patient during any questionnaire-based study."

The researchers stated that they had no relevant financial conflicts to disclose.

[email protected]

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Major Finding: Approximately 52% of epilepsy patients reported taking supplements or alternative medicines on a routine basis.

Data Source: A survey of 500 consecutive epilepsy patients conducted at the Barrow Neurological Institute in Phoenix between February and June 2012.

Disclosures: The researchers stated that they had no relevant financial conflicts to disclose.

Study hints at late-life cognitive effects of childhood epilepsy

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SAN DIEGO – Age-accelerated changes in certain aspects of cognition, including psychomotor speed and verbal memory, appear to occur in aging persons with childhood-onset epilepsy, compared with healthy controls, according to preliminary results from an ongoing study.

"One thing that remains unclear is how people with childhood-onset epilepsies age over the decades in terms of brain structure and function," Bruce Hermann, Ph.D., said in an interview during a poster session at the annual meeting of the American Epilepsy Society.

Dr. Bruce Hermann

"There has been much interest in the issues of cognitive and brain aging in the general population, and, of course, in disorders such as dementia and Alzheimer’s disease, but unknown is how individuals with childhood-onset epilepsy may age over the decades. There are very few population-based cohorts available to address that question."

Dr. Hermann, who directs of the Charles Matthews Neuropsychology Lab in the department of neurology at the University of Wisconsin, Madison, is examining this question in collaboration with Dr. Matti Sillanpää, professor emeritus of child neurology at the University of Turku, Finland.

Together they are studying Dr. Sillanpää’s well known population-based cohort of children with epilepsy and controls. Followed since their youth over the decades, the research participants now range in age from 45 to 62 years. These subjects are returning for a comprehensive battery of cognitive tests, neuroimaging, EEG, and clinical interview to evaluate their aging processes. Cognitive tests administered including the Alzheimer’s Disease Assessment Scale–Cognitive Subscale (ADAS-Cog), the Wechsler Adult Intelligence Scale–III (WAIS-III), the Boston Naming Test, the Controlled Oral Word Association Test, the Clock Drawing Test, the Wechsler Memory Scale–Revised (WMS-R), the Rey Auditory Verbal Learning Test, the Trail Making Test, and the Beck Depression Inventory. The follow-up visits also include structural MRI and PET amyloid and glucose imaging.

The mean age of patients examined to date is 57 years, and they are compared with a group of similarly aged matched controls. Dr. Hermann reported that in the first group of participants to be examined, 26 epilepsy patients performed significantly worse than did 31 controls on measures of psychomotor speed based on the WAIS-III (P less than .05) and in delayed verbal memory based on the WMS-R (P = .031).

"Secondary analyses revealed that patients with persisting abnormal EEG and either active epilepsy/seizures into adulthood had more adversely affected cognition compared to those whose epilepsy completely remitted," the researchers wrote in their poster.

Results from the PET imaging studies are pending, Dr. Hermann said, but preliminary results from the MRI studies demonstrated that there were no differences in cortical thickness between the epilepsy and control groups after correction for multiple comparisons and adjustment for age and gender. However, compared with the control group, the epilepsy group demonstrated a significant increase in the white matter hypointensity index (P less than .05) and a trend toward larger left and right lateral ventricles (P = .10). "What’s surprising is that their MRI results look as good as they do, compared with controls," Dr. Hermann said. "We thought we’d see more pathology and age-accelerated changes."

Dr. Sillanpää’s entire cohort is in the process of returning for study and the results should shed new light on the issues of cognitive and brain aging in childhood epilepsy.

The study was funded by the Finnish Government Research Fund and Citizens United for Research in Epilepsy (CURE). Dr. Hermann said that he had no relevant financial conflicts to disclose.

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SAN DIEGO – Age-accelerated changes in certain aspects of cognition, including psychomotor speed and verbal memory, appear to occur in aging persons with childhood-onset epilepsy, compared with healthy controls, according to preliminary results from an ongoing study.

"One thing that remains unclear is how people with childhood-onset epilepsies age over the decades in terms of brain structure and function," Bruce Hermann, Ph.D., said in an interview during a poster session at the annual meeting of the American Epilepsy Society.

Dr. Bruce Hermann

"There has been much interest in the issues of cognitive and brain aging in the general population, and, of course, in disorders such as dementia and Alzheimer’s disease, but unknown is how individuals with childhood-onset epilepsy may age over the decades. There are very few population-based cohorts available to address that question."

Dr. Hermann, who directs of the Charles Matthews Neuropsychology Lab in the department of neurology at the University of Wisconsin, Madison, is examining this question in collaboration with Dr. Matti Sillanpää, professor emeritus of child neurology at the University of Turku, Finland.

Together they are studying Dr. Sillanpää’s well known population-based cohort of children with epilepsy and controls. Followed since their youth over the decades, the research participants now range in age from 45 to 62 years. These subjects are returning for a comprehensive battery of cognitive tests, neuroimaging, EEG, and clinical interview to evaluate their aging processes. Cognitive tests administered including the Alzheimer’s Disease Assessment Scale–Cognitive Subscale (ADAS-Cog), the Wechsler Adult Intelligence Scale–III (WAIS-III), the Boston Naming Test, the Controlled Oral Word Association Test, the Clock Drawing Test, the Wechsler Memory Scale–Revised (WMS-R), the Rey Auditory Verbal Learning Test, the Trail Making Test, and the Beck Depression Inventory. The follow-up visits also include structural MRI and PET amyloid and glucose imaging.

The mean age of patients examined to date is 57 years, and they are compared with a group of similarly aged matched controls. Dr. Hermann reported that in the first group of participants to be examined, 26 epilepsy patients performed significantly worse than did 31 controls on measures of psychomotor speed based on the WAIS-III (P less than .05) and in delayed verbal memory based on the WMS-R (P = .031).

"Secondary analyses revealed that patients with persisting abnormal EEG and either active epilepsy/seizures into adulthood had more adversely affected cognition compared to those whose epilepsy completely remitted," the researchers wrote in their poster.

Results from the PET imaging studies are pending, Dr. Hermann said, but preliminary results from the MRI studies demonstrated that there were no differences in cortical thickness between the epilepsy and control groups after correction for multiple comparisons and adjustment for age and gender. However, compared with the control group, the epilepsy group demonstrated a significant increase in the white matter hypointensity index (P less than .05) and a trend toward larger left and right lateral ventricles (P = .10). "What’s surprising is that their MRI results look as good as they do, compared with controls," Dr. Hermann said. "We thought we’d see more pathology and age-accelerated changes."

Dr. Sillanpää’s entire cohort is in the process of returning for study and the results should shed new light on the issues of cognitive and brain aging in childhood epilepsy.

The study was funded by the Finnish Government Research Fund and Citizens United for Research in Epilepsy (CURE). Dr. Hermann said that he had no relevant financial conflicts to disclose.

[email protected]

SAN DIEGO – Age-accelerated changes in certain aspects of cognition, including psychomotor speed and verbal memory, appear to occur in aging persons with childhood-onset epilepsy, compared with healthy controls, according to preliminary results from an ongoing study.

"One thing that remains unclear is how people with childhood-onset epilepsies age over the decades in terms of brain structure and function," Bruce Hermann, Ph.D., said in an interview during a poster session at the annual meeting of the American Epilepsy Society.

Dr. Bruce Hermann

"There has been much interest in the issues of cognitive and brain aging in the general population, and, of course, in disorders such as dementia and Alzheimer’s disease, but unknown is how individuals with childhood-onset epilepsy may age over the decades. There are very few population-based cohorts available to address that question."

Dr. Hermann, who directs of the Charles Matthews Neuropsychology Lab in the department of neurology at the University of Wisconsin, Madison, is examining this question in collaboration with Dr. Matti Sillanpää, professor emeritus of child neurology at the University of Turku, Finland.

Together they are studying Dr. Sillanpää’s well known population-based cohort of children with epilepsy and controls. Followed since their youth over the decades, the research participants now range in age from 45 to 62 years. These subjects are returning for a comprehensive battery of cognitive tests, neuroimaging, EEG, and clinical interview to evaluate their aging processes. Cognitive tests administered including the Alzheimer’s Disease Assessment Scale–Cognitive Subscale (ADAS-Cog), the Wechsler Adult Intelligence Scale–III (WAIS-III), the Boston Naming Test, the Controlled Oral Word Association Test, the Clock Drawing Test, the Wechsler Memory Scale–Revised (WMS-R), the Rey Auditory Verbal Learning Test, the Trail Making Test, and the Beck Depression Inventory. The follow-up visits also include structural MRI and PET amyloid and glucose imaging.

The mean age of patients examined to date is 57 years, and they are compared with a group of similarly aged matched controls. Dr. Hermann reported that in the first group of participants to be examined, 26 epilepsy patients performed significantly worse than did 31 controls on measures of psychomotor speed based on the WAIS-III (P less than .05) and in delayed verbal memory based on the WMS-R (P = .031).

"Secondary analyses revealed that patients with persisting abnormal EEG and either active epilepsy/seizures into adulthood had more adversely affected cognition compared to those whose epilepsy completely remitted," the researchers wrote in their poster.

Results from the PET imaging studies are pending, Dr. Hermann said, but preliminary results from the MRI studies demonstrated that there were no differences in cortical thickness between the epilepsy and control groups after correction for multiple comparisons and adjustment for age and gender. However, compared with the control group, the epilepsy group demonstrated a significant increase in the white matter hypointensity index (P less than .05) and a trend toward larger left and right lateral ventricles (P = .10). "What’s surprising is that their MRI results look as good as they do, compared with controls," Dr. Hermann said. "We thought we’d see more pathology and age-accelerated changes."

Dr. Sillanpää’s entire cohort is in the process of returning for study and the results should shed new light on the issues of cognitive and brain aging in childhood epilepsy.

The study was funded by the Finnish Government Research Fund and Citizens United for Research in Epilepsy (CURE). Dr. Hermann said that he had no relevant financial conflicts to disclose.

[email protected]

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Study hints at late-life cognitive effects of childhood epilepsy
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Study hints at late-life cognitive effects of childhood epilepsy
Legacy Keywords
Age-accelerated changes, cognition, psychomotor speed, verbal memory, aging persons, childhood-onset epilepsy, Bruce Hermann, Ph.D., the American Epilepsy Society, dementia and Alzheimer’s disease, Charles Matthews Neuropsychology Lab, neurology, Dr. Matti Sillanpää, child neurology, Alzheimer’s Disease Assessment Scale–Cognitive Subscale, ADAS-Cog, Wechsler Adult Intelligence Scale–III, WAIS-III, the Boston Naming Test, the Controlled Oral Word Association Test, the Clock Drawing Test, the Wechsler Memory Scale–Revised, WMS-R, the Rey Auditory Verbal Learning Test, the Trail Making Test, and the Beck Depression Inventory, structural MRI and PET amyloid and glucose imaging,

Legacy Keywords
Age-accelerated changes, cognition, psychomotor speed, verbal memory, aging persons, childhood-onset epilepsy, Bruce Hermann, Ph.D., the American Epilepsy Society, dementia and Alzheimer’s disease, Charles Matthews Neuropsychology Lab, neurology, Dr. Matti Sillanpää, child neurology, Alzheimer’s Disease Assessment Scale–Cognitive Subscale, ADAS-Cog, Wechsler Adult Intelligence Scale–III, WAIS-III, the Boston Naming Test, the Controlled Oral Word Association Test, the Clock Drawing Test, the Wechsler Memory Scale–Revised, WMS-R, the Rey Auditory Verbal Learning Test, the Trail Making Test, and the Beck Depression Inventory, structural MRI and PET amyloid and glucose imaging,

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AT THE ANNUAL MEETING OF THE AMERICAN EPILEPSY SOCIETY

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Major Finding: A cohort of 26 patients with childhood-onset epilepsy who were now aged 45-62 years performed significantly worse than did 31 controls on measures of psychomotor speed based on the Wechsler Adult Intelligence Scale-III (P less than .05) and in delayed verbal memory based on the Wechsler Memory Scale-Revised (P = .031).

Data Source: A study of 26 epilepsy patients with a mean age of 57 years who have been followed since childhood and who were compared with 31 similarly aged matched controls.

Disclosures: The study was funded by the Finnish Research Fund and Citizens United for Research in Epilepsy (CURE). Dr. Hermann said that he had no relevant financial conflicts to disclose.