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The Centers for Disease Control and Prevention (CDC) estimates that 1.1% of US adults have epilepsy. Although 89% report seeing a physician in the past year about their condition, only 62% of adults saw a neurologist or seizure specialist.
These findings prompted Rosemary Kobau, MPH, the acting team lead for the CDC’s epilepsy program, to take a closer look at referral patterns by primary care providers in the United States.
She also noticed what she calls a “big red flag”: “We found that 40% of primary care providers did not indicate that they would refer their patient with epilepsy to a neurologist when their patient fails to respond to treatment, or if they have a change in seizure activity,” Dr. Kobau told this news organization. Individuals with uncontrolled seizures are at risk for multiple adverse health outcomes, along with emotional problems, social stigma, and decreased life expectancy.
Factors that influenced primary care clinicians to refer to a neurologist included prompt availability of appointments, ability to talk to the neurologist, and whether a patient’s insurance covered specialty visits. Proximity of a specialist also was cited as a barrier, because neurologists can be hard to find outside of urban centers.
Wait lists for neurologist are not like to get shorter any time soon, according to a 2019 report from the American Academy of Neurology (AAN). A 2013 workforce report from the AAN found 35 US states, representing 62% of the US population, had fewer neurologists than needed to meet demand. By 2025, demand is projected to exceed supply in 41 states.
Much of the increasing demand for adult neurologists is driven by aging of the population, resulting in higher rates of stroke, Parkinson’s disease, and dementia. But pediatric neurologists are also overwhelmed: Pediatric neurology is one of the top three pediatric subspecialties with the longest wait times. The shortage is exacerbated by difficulties in transitioning adolescents with epilepsy — many diagnosed early in life with neurodevelopmental and epileptic encephalopathy and problem lists that include learning disorders, behavioral issues, and other chronic medical problems — to adult epilepsy specialists.
Although one of the solutions offered by the AAN is more training in epilepsy management for non-neurologists (such as CME programs developed by the American Epilepsy Society), many primary care providers are overwhelmed already. Still, primary care providers are well-positioned to help answer some of the most important questions about the management of patients with seizure disorders.
How to Help
“There’s a lot the pediatrician can do when a child presents with seizures,” said Sucheta Joshi, MD, who serves as the medical director of the Neurological Institute Comprehensive Epilepsy Center at Children’s Hospital Los Angeles.
Step one is helping to allay the fears of family members who witness a seizure. “They can talk about seizure safety, they can talk about first aid when a seizure happens, they can talk about what to do, what not to do,” she advised. Clinicians who see children can find resources for families on the American Academy of Pediatrics (AAP) National Coordinating Center for Epilepsy website, including a 24/7 helpline, information about local chapters of the Epilepsy Foundation, and first aid training for seizures.
Fred Lado, MD, PhD, a professor of neurology at the Zucker School of Medicine at Hofstra-Norwell in Hempstead, New York, said that primary care clinicians have several decision points when it comes to their patients with epilepsy.
The first is whether to initiate medication after the first episode of seizure. Studies show that the risk for a second seizure decreases in patients started on anticonvulsant therapy after a first event, but many clinicians don›t want to commit patients to long-term therapy without more evidence that the patient has epilepsy. Studies have shown that delaying therapy until a second seizure occurs doesn›t negatively affect quality of life and long-term prognosis.
The International League Against Epilepsy (ILAE) advised treatment for patients with two or more unprovoked seizures but revised its recommendation in 2014 to begin treatment after a first seizure for individuals at high risk for a second seizure. History of a brain insult related to a stroke, mass lesion in the brain, or trauma are risk factors for a second seizure, whereas seizures provoked by a concussion, alcohol withdrawal, or exposure to toxins carry low risk for additional episodes.
Dr. Lado also raised the importance of taking a good history from a patient presenting for medical care for a new-onset seizure to determine whether the recent episode is really the first such incident.
Up to half of patients presenting to emergency departments for convulsive seizures have a history of a preceding nonmotor seizure that the patient or their family members have failed to identify. As many as 60% of people with epilepsy have focal seizures, but the majority of these are nonmotor seizures. As a result, these patients often go without a diagnosis until they develop bilateral tonic-clonic seizures — by which time they may already been injured during a seizure or had an accident while driving.
In terms of imaging and other workup that should be performed prior to the first appointment with a pediatric neurologist or epilepsy specialist, Dr. Joshi generally recommends EEG. She also prefers MRI over CT, which is better for finding lesions that tend to cause seizures in kids such as developmental abnormalities like a cortical malformation or a perinatal process. Obtaining an MRI prior to seeing the neurologist is elective, depending on whether the history and clinical presentation suggest a focal lesion.
For adults, Dr. Lado also recommends an EEG and MRI to start but rarely advises other laboratory studies. When patients present to the emergency department with a new-onset seizure, the workup commonly includes a chemistry panel to rule out hypoglycemia or electrolyte abnormalities. But in the outpatient setting, where a patient describes symptoms of a seizure that occurred a week ago or longer, Dr. Lado said the yield of such assessments is low.
“I think the labs are often more useful as you’re thinking about an anticonvulsant,” Dr. Lado said. Particularly for a patient who is facing a long wait to see specialist, obtaining baseline liver enzymes and a complete blood cell count is worthwhile, because many antiseizure medications can cause anemia or liver damage.
Dr. Lado agreed that referral to a specialist is critical for patients with drug-resistant seizures, defined by the ILAE as seizures that persist despite the use of two or more anticonvulsants.
“One of the great problems in epilepsy care is a sort of sense of complacency,” he said. Some of his own patients have become comfortable with their epilepsy diagnosis and profess to be untroubled by having a few seizures per year. In 2018, Dr. Kobau was a co-author on a study reporting that less than half of US adults taking seizure medications were seizure-free in the past year.
This scenario is an opportunity for primary care providers to help determine whether their patients are taking their antiseizure medication correctly. A referral to a specialist might not be necessary if the seizures are occurring because the patient’s prescription ran out. Similarly, if a patient doesn’t take the medication because of unpleasant side effects, raising the dose won’t help.
Dr. Lado’s advice is to explore why the patient’s management plan is not working and make adjustments tailored to their needs. The solution might be as simple as changing the patient to an extended-release formulation to lower the number of daily doses needed, he said.
But for patients who do have recurrent seizures despite good adherence, Dr. Lado strongly urges a referral to an epilepsy specialist. He serves as president of the National Association of Epilepsy Centers (NAEC), a network of more than 260 epilepsy centers in the United States that offer the services of epileptologists, neurosurgeons, neuropsychologists, nurse specialists, EEG technologists, social workers, and others with training and experience in epilepsy care. In addition to adjusting and monitoring medications, patients seen at an NAEC can be evaluated for surgery, neurostimulators, and ketogenic diets.
Improving Self-Management
Another role that primary care can play is promoting self-efficacy among patients with epilepsy.
“Providers have historically tended to focus on medication adherence alone, ignoring other health enhancing behaviors, even just sleep hygiene,” Dr. Kobau said. But adequate sleep, regular exercise, a healthy diet, avoidance of tobacco and excessive alcohol, and stress management are all important for seizure management.
In 2007, CDC launched the Managing Epilepsy Well (MEW) Network, which has the mission of advancing self-management research in collaboration with patients with epilepsy as well as a broad range of healthcare providers. “It’s a patient-driven kind of approach consistent with community-based, participatory practice research,” said Dr. Kobau, who oversees the initiative.
The MEW network, which consists of six prevention research centers funded by CDC, has piloted and evaluated several evidence-based programs that can help patients better control their epilepsy.
One such intervention is Project Uplift, which delivers mindfulness-based cognitive-behavioral therapy in a virtual group setting. Behavioral therapy is important for people with seizure disorders, whose risk for depression is more than twice that of the general population. The initial trial found the intervention was effective in reducing depressive symptoms in participants, and research since has focused on adapting the program to provide culturally appropriate care to underserved populations. The eight sessions, held weekly, are available in both English and Spanish.
Another program, HOBSCOTCH, allows patients to meet one-on-one virtually with a trained coach to work on skills for improving attention and memory, common problems among people with epilepsy.
MINDSET involves a tablet-based clinical decision tool that patients can use to track their self-management behaviors, such as taking their medications, seizure triggers, symptoms of depression, and keeping their clinic appointments. It also helps them monitor whether they are getting adequate sleep, reducing their stress, and maintaining social networks. The tool generates a printable action plan for patients to prompt discussion and shared decision-making between patient and clinician to prioritize behavioral issues, set goals, and monitor changes over time.
Clinicians can refer patients to any of the MEW interventions, or patients can enroll themselves online.
Emerging Approaches
The AAN’s 2019 report promoted use of technological solutions to bridge the gap between primary care providers and scarce — as well as distant — neurologists. Many health systems support e-consults between clinicians, allowing simple discussions about medications and advice about testing recommended prior to a neurology visit. Initially developed for treatment for infection with hepatitis C virus, Project Extension for Community Healthcare Outcomes (ECHO) uses a central hub of specialists to support primary care providers via teleconference to conduct case reviews and didactic sessions.
Much of Dr. Joshi’s work has focused on ways to coordinate care to children who live far from a pediatric epilepsy center. In a previous position at the University of Michigan, her team was one of four sites funded by the AAP’s National Coordinating Center for Epilepsy to pilot an intervention using telehealth. Implemented in 2017-2019, the initiative used quality improvement methodology to explore a model where patients went to the office of their primary care provider so that both could participate in the call with a neurologist.
The strategy was successful, resulting in reduced out-of-pocket costs, missed school hours, and missed work hours. Patient satisfaction was high (97%), and more parents in the intervention group than the control group agreed that it was easier to obtain appointments with specialists (95% vs 65%, respectively).
And since the pandemic, in-home telehealth visits have become commonplace, adding to the potential convenience and cost savings of telemedicine.
CDC has invested in Project ECHO as a training program for nonspecialist providers to manage epilepsy. Based at the University of Cincinnati, the initial pilot from 2017 to 2019 trained primary care providers in Ohio and neighboring states using monthly 1-hour sessions via Zoom. According to Dr. Kobau, “Of those 164 primary care providers, 97% reported higher interest in improving their care of patients with epilepsy, and at least 98% reported that they were more confident in treating their patients with epilepsy.” Since that time, over 900 providers have received the training, which now attracts participants from all over the country.
Although the current burden of managing epilepsy now seems to be falling heavily on primary care providers, Dr. Lado said he believes they can provide useful insight into their patients’ history and needs: “I think they are in a unique and impactful position, mostly to refer those patients who are still having seizures.”
Additional Resources for Patients and Providers
- American Academy of Pediatrics National Coordinating Center for Epilepsy
- American Epilepsy Society (CME courses designed to designed to increase knowledge about epilepsy diagnosis, treatment, and management; seizure first-aid; epilepsy stigma; and social determinants of health for people with epilepsy)
- Centers for Disease Control and Prevention .
Dr. Joshi, Dr. Kobau, and Dr. Lado report no relevant financial relationships.
Dr. Thomas is a pediatrician and epidemiologist living in Portland, Oregon.
A version of this article appeared on Medscape.com .
The Centers for Disease Control and Prevention (CDC) estimates that 1.1% of US adults have epilepsy. Although 89% report seeing a physician in the past year about their condition, only 62% of adults saw a neurologist or seizure specialist.
These findings prompted Rosemary Kobau, MPH, the acting team lead for the CDC’s epilepsy program, to take a closer look at referral patterns by primary care providers in the United States.
She also noticed what she calls a “big red flag”: “We found that 40% of primary care providers did not indicate that they would refer their patient with epilepsy to a neurologist when their patient fails to respond to treatment, or if they have a change in seizure activity,” Dr. Kobau told this news organization. Individuals with uncontrolled seizures are at risk for multiple adverse health outcomes, along with emotional problems, social stigma, and decreased life expectancy.
Factors that influenced primary care clinicians to refer to a neurologist included prompt availability of appointments, ability to talk to the neurologist, and whether a patient’s insurance covered specialty visits. Proximity of a specialist also was cited as a barrier, because neurologists can be hard to find outside of urban centers.
Wait lists for neurologist are not like to get shorter any time soon, according to a 2019 report from the American Academy of Neurology (AAN). A 2013 workforce report from the AAN found 35 US states, representing 62% of the US population, had fewer neurologists than needed to meet demand. By 2025, demand is projected to exceed supply in 41 states.
Much of the increasing demand for adult neurologists is driven by aging of the population, resulting in higher rates of stroke, Parkinson’s disease, and dementia. But pediatric neurologists are also overwhelmed: Pediatric neurology is one of the top three pediatric subspecialties with the longest wait times. The shortage is exacerbated by difficulties in transitioning adolescents with epilepsy — many diagnosed early in life with neurodevelopmental and epileptic encephalopathy and problem lists that include learning disorders, behavioral issues, and other chronic medical problems — to adult epilepsy specialists.
Although one of the solutions offered by the AAN is more training in epilepsy management for non-neurologists (such as CME programs developed by the American Epilepsy Society), many primary care providers are overwhelmed already. Still, primary care providers are well-positioned to help answer some of the most important questions about the management of patients with seizure disorders.
How to Help
“There’s a lot the pediatrician can do when a child presents with seizures,” said Sucheta Joshi, MD, who serves as the medical director of the Neurological Institute Comprehensive Epilepsy Center at Children’s Hospital Los Angeles.
Step one is helping to allay the fears of family members who witness a seizure. “They can talk about seizure safety, they can talk about first aid when a seizure happens, they can talk about what to do, what not to do,” she advised. Clinicians who see children can find resources for families on the American Academy of Pediatrics (AAP) National Coordinating Center for Epilepsy website, including a 24/7 helpline, information about local chapters of the Epilepsy Foundation, and first aid training for seizures.
Fred Lado, MD, PhD, a professor of neurology at the Zucker School of Medicine at Hofstra-Norwell in Hempstead, New York, said that primary care clinicians have several decision points when it comes to their patients with epilepsy.
The first is whether to initiate medication after the first episode of seizure. Studies show that the risk for a second seizure decreases in patients started on anticonvulsant therapy after a first event, but many clinicians don›t want to commit patients to long-term therapy without more evidence that the patient has epilepsy. Studies have shown that delaying therapy until a second seizure occurs doesn›t negatively affect quality of life and long-term prognosis.
The International League Against Epilepsy (ILAE) advised treatment for patients with two or more unprovoked seizures but revised its recommendation in 2014 to begin treatment after a first seizure for individuals at high risk for a second seizure. History of a brain insult related to a stroke, mass lesion in the brain, or trauma are risk factors for a second seizure, whereas seizures provoked by a concussion, alcohol withdrawal, or exposure to toxins carry low risk for additional episodes.
Dr. Lado also raised the importance of taking a good history from a patient presenting for medical care for a new-onset seizure to determine whether the recent episode is really the first such incident.
Up to half of patients presenting to emergency departments for convulsive seizures have a history of a preceding nonmotor seizure that the patient or their family members have failed to identify. As many as 60% of people with epilepsy have focal seizures, but the majority of these are nonmotor seizures. As a result, these patients often go without a diagnosis until they develop bilateral tonic-clonic seizures — by which time they may already been injured during a seizure or had an accident while driving.
In terms of imaging and other workup that should be performed prior to the first appointment with a pediatric neurologist or epilepsy specialist, Dr. Joshi generally recommends EEG. She also prefers MRI over CT, which is better for finding lesions that tend to cause seizures in kids such as developmental abnormalities like a cortical malformation or a perinatal process. Obtaining an MRI prior to seeing the neurologist is elective, depending on whether the history and clinical presentation suggest a focal lesion.
For adults, Dr. Lado also recommends an EEG and MRI to start but rarely advises other laboratory studies. When patients present to the emergency department with a new-onset seizure, the workup commonly includes a chemistry panel to rule out hypoglycemia or electrolyte abnormalities. But in the outpatient setting, where a patient describes symptoms of a seizure that occurred a week ago or longer, Dr. Lado said the yield of such assessments is low.
“I think the labs are often more useful as you’re thinking about an anticonvulsant,” Dr. Lado said. Particularly for a patient who is facing a long wait to see specialist, obtaining baseline liver enzymes and a complete blood cell count is worthwhile, because many antiseizure medications can cause anemia or liver damage.
Dr. Lado agreed that referral to a specialist is critical for patients with drug-resistant seizures, defined by the ILAE as seizures that persist despite the use of two or more anticonvulsants.
“One of the great problems in epilepsy care is a sort of sense of complacency,” he said. Some of his own patients have become comfortable with their epilepsy diagnosis and profess to be untroubled by having a few seizures per year. In 2018, Dr. Kobau was a co-author on a study reporting that less than half of US adults taking seizure medications were seizure-free in the past year.
This scenario is an opportunity for primary care providers to help determine whether their patients are taking their antiseizure medication correctly. A referral to a specialist might not be necessary if the seizures are occurring because the patient’s prescription ran out. Similarly, if a patient doesn’t take the medication because of unpleasant side effects, raising the dose won’t help.
Dr. Lado’s advice is to explore why the patient’s management plan is not working and make adjustments tailored to their needs. The solution might be as simple as changing the patient to an extended-release formulation to lower the number of daily doses needed, he said.
But for patients who do have recurrent seizures despite good adherence, Dr. Lado strongly urges a referral to an epilepsy specialist. He serves as president of the National Association of Epilepsy Centers (NAEC), a network of more than 260 epilepsy centers in the United States that offer the services of epileptologists, neurosurgeons, neuropsychologists, nurse specialists, EEG technologists, social workers, and others with training and experience in epilepsy care. In addition to adjusting and monitoring medications, patients seen at an NAEC can be evaluated for surgery, neurostimulators, and ketogenic diets.
Improving Self-Management
Another role that primary care can play is promoting self-efficacy among patients with epilepsy.
“Providers have historically tended to focus on medication adherence alone, ignoring other health enhancing behaviors, even just sleep hygiene,” Dr. Kobau said. But adequate sleep, regular exercise, a healthy diet, avoidance of tobacco and excessive alcohol, and stress management are all important for seizure management.
In 2007, CDC launched the Managing Epilepsy Well (MEW) Network, which has the mission of advancing self-management research in collaboration with patients with epilepsy as well as a broad range of healthcare providers. “It’s a patient-driven kind of approach consistent with community-based, participatory practice research,” said Dr. Kobau, who oversees the initiative.
The MEW network, which consists of six prevention research centers funded by CDC, has piloted and evaluated several evidence-based programs that can help patients better control their epilepsy.
One such intervention is Project Uplift, which delivers mindfulness-based cognitive-behavioral therapy in a virtual group setting. Behavioral therapy is important for people with seizure disorders, whose risk for depression is more than twice that of the general population. The initial trial found the intervention was effective in reducing depressive symptoms in participants, and research since has focused on adapting the program to provide culturally appropriate care to underserved populations. The eight sessions, held weekly, are available in both English and Spanish.
Another program, HOBSCOTCH, allows patients to meet one-on-one virtually with a trained coach to work on skills for improving attention and memory, common problems among people with epilepsy.
MINDSET involves a tablet-based clinical decision tool that patients can use to track their self-management behaviors, such as taking their medications, seizure triggers, symptoms of depression, and keeping their clinic appointments. It also helps them monitor whether they are getting adequate sleep, reducing their stress, and maintaining social networks. The tool generates a printable action plan for patients to prompt discussion and shared decision-making between patient and clinician to prioritize behavioral issues, set goals, and monitor changes over time.
Clinicians can refer patients to any of the MEW interventions, or patients can enroll themselves online.
Emerging Approaches
The AAN’s 2019 report promoted use of technological solutions to bridge the gap between primary care providers and scarce — as well as distant — neurologists. Many health systems support e-consults between clinicians, allowing simple discussions about medications and advice about testing recommended prior to a neurology visit. Initially developed for treatment for infection with hepatitis C virus, Project Extension for Community Healthcare Outcomes (ECHO) uses a central hub of specialists to support primary care providers via teleconference to conduct case reviews and didactic sessions.
Much of Dr. Joshi’s work has focused on ways to coordinate care to children who live far from a pediatric epilepsy center. In a previous position at the University of Michigan, her team was one of four sites funded by the AAP’s National Coordinating Center for Epilepsy to pilot an intervention using telehealth. Implemented in 2017-2019, the initiative used quality improvement methodology to explore a model where patients went to the office of their primary care provider so that both could participate in the call with a neurologist.
The strategy was successful, resulting in reduced out-of-pocket costs, missed school hours, and missed work hours. Patient satisfaction was high (97%), and more parents in the intervention group than the control group agreed that it was easier to obtain appointments with specialists (95% vs 65%, respectively).
And since the pandemic, in-home telehealth visits have become commonplace, adding to the potential convenience and cost savings of telemedicine.
CDC has invested in Project ECHO as a training program for nonspecialist providers to manage epilepsy. Based at the University of Cincinnati, the initial pilot from 2017 to 2019 trained primary care providers in Ohio and neighboring states using monthly 1-hour sessions via Zoom. According to Dr. Kobau, “Of those 164 primary care providers, 97% reported higher interest in improving their care of patients with epilepsy, and at least 98% reported that they were more confident in treating their patients with epilepsy.” Since that time, over 900 providers have received the training, which now attracts participants from all over the country.
Although the current burden of managing epilepsy now seems to be falling heavily on primary care providers, Dr. Lado said he believes they can provide useful insight into their patients’ history and needs: “I think they are in a unique and impactful position, mostly to refer those patients who are still having seizures.”
Additional Resources for Patients and Providers
- American Academy of Pediatrics National Coordinating Center for Epilepsy
- American Epilepsy Society (CME courses designed to designed to increase knowledge about epilepsy diagnosis, treatment, and management; seizure first-aid; epilepsy stigma; and social determinants of health for people with epilepsy)
- Centers for Disease Control and Prevention .
Dr. Joshi, Dr. Kobau, and Dr. Lado report no relevant financial relationships.
Dr. Thomas is a pediatrician and epidemiologist living in Portland, Oregon.
A version of this article appeared on Medscape.com .
The Centers for Disease Control and Prevention (CDC) estimates that 1.1% of US adults have epilepsy. Although 89% report seeing a physician in the past year about their condition, only 62% of adults saw a neurologist or seizure specialist.
These findings prompted Rosemary Kobau, MPH, the acting team lead for the CDC’s epilepsy program, to take a closer look at referral patterns by primary care providers in the United States.
She also noticed what she calls a “big red flag”: “We found that 40% of primary care providers did not indicate that they would refer their patient with epilepsy to a neurologist when their patient fails to respond to treatment, or if they have a change in seizure activity,” Dr. Kobau told this news organization. Individuals with uncontrolled seizures are at risk for multiple adverse health outcomes, along with emotional problems, social stigma, and decreased life expectancy.
Factors that influenced primary care clinicians to refer to a neurologist included prompt availability of appointments, ability to talk to the neurologist, and whether a patient’s insurance covered specialty visits. Proximity of a specialist also was cited as a barrier, because neurologists can be hard to find outside of urban centers.
Wait lists for neurologist are not like to get shorter any time soon, according to a 2019 report from the American Academy of Neurology (AAN). A 2013 workforce report from the AAN found 35 US states, representing 62% of the US population, had fewer neurologists than needed to meet demand. By 2025, demand is projected to exceed supply in 41 states.
Much of the increasing demand for adult neurologists is driven by aging of the population, resulting in higher rates of stroke, Parkinson’s disease, and dementia. But pediatric neurologists are also overwhelmed: Pediatric neurology is one of the top three pediatric subspecialties with the longest wait times. The shortage is exacerbated by difficulties in transitioning adolescents with epilepsy — many diagnosed early in life with neurodevelopmental and epileptic encephalopathy and problem lists that include learning disorders, behavioral issues, and other chronic medical problems — to adult epilepsy specialists.
Although one of the solutions offered by the AAN is more training in epilepsy management for non-neurologists (such as CME programs developed by the American Epilepsy Society), many primary care providers are overwhelmed already. Still, primary care providers are well-positioned to help answer some of the most important questions about the management of patients with seizure disorders.
How to Help
“There’s a lot the pediatrician can do when a child presents with seizures,” said Sucheta Joshi, MD, who serves as the medical director of the Neurological Institute Comprehensive Epilepsy Center at Children’s Hospital Los Angeles.
Step one is helping to allay the fears of family members who witness a seizure. “They can talk about seizure safety, they can talk about first aid when a seizure happens, they can talk about what to do, what not to do,” she advised. Clinicians who see children can find resources for families on the American Academy of Pediatrics (AAP) National Coordinating Center for Epilepsy website, including a 24/7 helpline, information about local chapters of the Epilepsy Foundation, and first aid training for seizures.
Fred Lado, MD, PhD, a professor of neurology at the Zucker School of Medicine at Hofstra-Norwell in Hempstead, New York, said that primary care clinicians have several decision points when it comes to their patients with epilepsy.
The first is whether to initiate medication after the first episode of seizure. Studies show that the risk for a second seizure decreases in patients started on anticonvulsant therapy after a first event, but many clinicians don›t want to commit patients to long-term therapy without more evidence that the patient has epilepsy. Studies have shown that delaying therapy until a second seizure occurs doesn›t negatively affect quality of life and long-term prognosis.
The International League Against Epilepsy (ILAE) advised treatment for patients with two or more unprovoked seizures but revised its recommendation in 2014 to begin treatment after a first seizure for individuals at high risk for a second seizure. History of a brain insult related to a stroke, mass lesion in the brain, or trauma are risk factors for a second seizure, whereas seizures provoked by a concussion, alcohol withdrawal, or exposure to toxins carry low risk for additional episodes.
Dr. Lado also raised the importance of taking a good history from a patient presenting for medical care for a new-onset seizure to determine whether the recent episode is really the first such incident.
Up to half of patients presenting to emergency departments for convulsive seizures have a history of a preceding nonmotor seizure that the patient or their family members have failed to identify. As many as 60% of people with epilepsy have focal seizures, but the majority of these are nonmotor seizures. As a result, these patients often go without a diagnosis until they develop bilateral tonic-clonic seizures — by which time they may already been injured during a seizure or had an accident while driving.
In terms of imaging and other workup that should be performed prior to the first appointment with a pediatric neurologist or epilepsy specialist, Dr. Joshi generally recommends EEG. She also prefers MRI over CT, which is better for finding lesions that tend to cause seizures in kids such as developmental abnormalities like a cortical malformation or a perinatal process. Obtaining an MRI prior to seeing the neurologist is elective, depending on whether the history and clinical presentation suggest a focal lesion.
For adults, Dr. Lado also recommends an EEG and MRI to start but rarely advises other laboratory studies. When patients present to the emergency department with a new-onset seizure, the workup commonly includes a chemistry panel to rule out hypoglycemia or electrolyte abnormalities. But in the outpatient setting, where a patient describes symptoms of a seizure that occurred a week ago or longer, Dr. Lado said the yield of such assessments is low.
“I think the labs are often more useful as you’re thinking about an anticonvulsant,” Dr. Lado said. Particularly for a patient who is facing a long wait to see specialist, obtaining baseline liver enzymes and a complete blood cell count is worthwhile, because many antiseizure medications can cause anemia or liver damage.
Dr. Lado agreed that referral to a specialist is critical for patients with drug-resistant seizures, defined by the ILAE as seizures that persist despite the use of two or more anticonvulsants.
“One of the great problems in epilepsy care is a sort of sense of complacency,” he said. Some of his own patients have become comfortable with their epilepsy diagnosis and profess to be untroubled by having a few seizures per year. In 2018, Dr. Kobau was a co-author on a study reporting that less than half of US adults taking seizure medications were seizure-free in the past year.
This scenario is an opportunity for primary care providers to help determine whether their patients are taking their antiseizure medication correctly. A referral to a specialist might not be necessary if the seizures are occurring because the patient’s prescription ran out. Similarly, if a patient doesn’t take the medication because of unpleasant side effects, raising the dose won’t help.
Dr. Lado’s advice is to explore why the patient’s management plan is not working and make adjustments tailored to their needs. The solution might be as simple as changing the patient to an extended-release formulation to lower the number of daily doses needed, he said.
But for patients who do have recurrent seizures despite good adherence, Dr. Lado strongly urges a referral to an epilepsy specialist. He serves as president of the National Association of Epilepsy Centers (NAEC), a network of more than 260 epilepsy centers in the United States that offer the services of epileptologists, neurosurgeons, neuropsychologists, nurse specialists, EEG technologists, social workers, and others with training and experience in epilepsy care. In addition to adjusting and monitoring medications, patients seen at an NAEC can be evaluated for surgery, neurostimulators, and ketogenic diets.
Improving Self-Management
Another role that primary care can play is promoting self-efficacy among patients with epilepsy.
“Providers have historically tended to focus on medication adherence alone, ignoring other health enhancing behaviors, even just sleep hygiene,” Dr. Kobau said. But adequate sleep, regular exercise, a healthy diet, avoidance of tobacco and excessive alcohol, and stress management are all important for seizure management.
In 2007, CDC launched the Managing Epilepsy Well (MEW) Network, which has the mission of advancing self-management research in collaboration with patients with epilepsy as well as a broad range of healthcare providers. “It’s a patient-driven kind of approach consistent with community-based, participatory practice research,” said Dr. Kobau, who oversees the initiative.
The MEW network, which consists of six prevention research centers funded by CDC, has piloted and evaluated several evidence-based programs that can help patients better control their epilepsy.
One such intervention is Project Uplift, which delivers mindfulness-based cognitive-behavioral therapy in a virtual group setting. Behavioral therapy is important for people with seizure disorders, whose risk for depression is more than twice that of the general population. The initial trial found the intervention was effective in reducing depressive symptoms in participants, and research since has focused on adapting the program to provide culturally appropriate care to underserved populations. The eight sessions, held weekly, are available in both English and Spanish.
Another program, HOBSCOTCH, allows patients to meet one-on-one virtually with a trained coach to work on skills for improving attention and memory, common problems among people with epilepsy.
MINDSET involves a tablet-based clinical decision tool that patients can use to track their self-management behaviors, such as taking their medications, seizure triggers, symptoms of depression, and keeping their clinic appointments. It also helps them monitor whether they are getting adequate sleep, reducing their stress, and maintaining social networks. The tool generates a printable action plan for patients to prompt discussion and shared decision-making between patient and clinician to prioritize behavioral issues, set goals, and monitor changes over time.
Clinicians can refer patients to any of the MEW interventions, or patients can enroll themselves online.
Emerging Approaches
The AAN’s 2019 report promoted use of technological solutions to bridge the gap between primary care providers and scarce — as well as distant — neurologists. Many health systems support e-consults between clinicians, allowing simple discussions about medications and advice about testing recommended prior to a neurology visit. Initially developed for treatment for infection with hepatitis C virus, Project Extension for Community Healthcare Outcomes (ECHO) uses a central hub of specialists to support primary care providers via teleconference to conduct case reviews and didactic sessions.
Much of Dr. Joshi’s work has focused on ways to coordinate care to children who live far from a pediatric epilepsy center. In a previous position at the University of Michigan, her team was one of four sites funded by the AAP’s National Coordinating Center for Epilepsy to pilot an intervention using telehealth. Implemented in 2017-2019, the initiative used quality improvement methodology to explore a model where patients went to the office of their primary care provider so that both could participate in the call with a neurologist.
The strategy was successful, resulting in reduced out-of-pocket costs, missed school hours, and missed work hours. Patient satisfaction was high (97%), and more parents in the intervention group than the control group agreed that it was easier to obtain appointments with specialists (95% vs 65%, respectively).
And since the pandemic, in-home telehealth visits have become commonplace, adding to the potential convenience and cost savings of telemedicine.
CDC has invested in Project ECHO as a training program for nonspecialist providers to manage epilepsy. Based at the University of Cincinnati, the initial pilot from 2017 to 2019 trained primary care providers in Ohio and neighboring states using monthly 1-hour sessions via Zoom. According to Dr. Kobau, “Of those 164 primary care providers, 97% reported higher interest in improving their care of patients with epilepsy, and at least 98% reported that they were more confident in treating their patients with epilepsy.” Since that time, over 900 providers have received the training, which now attracts participants from all over the country.
Although the current burden of managing epilepsy now seems to be falling heavily on primary care providers, Dr. Lado said he believes they can provide useful insight into their patients’ history and needs: “I think they are in a unique and impactful position, mostly to refer those patients who are still having seizures.”
Additional Resources for Patients and Providers
- American Academy of Pediatrics National Coordinating Center for Epilepsy
- American Epilepsy Society (CME courses designed to designed to increase knowledge about epilepsy diagnosis, treatment, and management; seizure first-aid; epilepsy stigma; and social determinants of health for people with epilepsy)
- Centers for Disease Control and Prevention .
Dr. Joshi, Dr. Kobau, and Dr. Lado report no relevant financial relationships.
Dr. Thomas is a pediatrician and epidemiologist living in Portland, Oregon.
A version of this article appeared on Medscape.com .
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<root generator="drupal.xsl" gversion="1.7"> <header> <fileName>166971</fileName> <TBEID>0C04E969.SIG</TBEID> <TBUniqueIdentifier>MD_0C04E969</TBUniqueIdentifier> <newsOrJournal>News</newsOrJournal> <publisherName>Frontline Medical Communications</publisherName> <storyname/> <articleType>2</articleType> <TBLocation>QC Done-All Pubs</TBLocation> <QCDate>20240215T152142</QCDate> <firstPublished>20240215T153946</firstPublished> <LastPublished>20240215T153946</LastPublished> <pubStatus qcode="stat:"/> <embargoDate/> <killDate/> <CMSDate>20240215T153946</CMSDate> <articleSource/> <facebookInfo/> <meetingNumber/> <byline>Ann Thomas, MD, MPH</byline> <bylineText>ANN THOMAS, MD, MPH</bylineText> <bylineFull>ANN THOMAS, MD, MPH</bylineFull> <bylineTitleText/> <USOrGlobal/> <wireDocType/> <newsDocType>News</newsDocType> <journalDocType/> <linkLabel/> <pageRange/> <citation/> <quizID/> <indexIssueDate/> <itemClass qcode="ninat:text"/> <provider qcode="provider:imng"> <name>IMNG Medical Media</name> <rightsInfo> <copyrightHolder> <name>Frontline Medical News</name> </copyrightHolder> <copyrightNotice>Copyright (c) 2015 Frontline Medical News, a Frontline Medical Communications Inc. company. All rights reserved. This material may not be published, broadcast, copied, or otherwise reproduced or distributed without the prior written permission of Frontline Medical Communications Inc.</copyrightNotice> </rightsInfo> </provider> <abstract/> <metaDescription>Using data from a 2018 online survey of US internists, pediatricians, family medicine physicians, and nurse practitioners, she found that 90% of providers would</metaDescription> <articlePDF/> <teaserImage/> <teaser>Information to aid primary care physicians in referring patients with epilepsy to specialist.</teaser> <title>How PCPs Can Contribute to Epilepsy Care</title> <deck/> <disclaimer/> <AuthorList/> <articleURL/> <doi/> <pubMedID/> <publishXMLStatus/> <publishXMLVersion>1</publishXMLVersion> <useEISSN>0</useEISSN> <urgency/> <pubPubdateYear/> <pubPubdateMonth/> <pubPubdateDay/> <pubVolume/> <pubNumber/> <wireChannels/> <primaryCMSID/> <CMSIDs/> <keywords/> <seeAlsos/> <publications_g> <publicationData> <publicationCode>fp</publicationCode> <pubIssueName/> <pubArticleType/> <pubTopics/> <pubCategories/> <pubSections/> </publicationData> <publicationData> <publicationCode>im</publicationCode> <pubIssueName/> <pubArticleType/> <pubTopics/> <pubCategories/> <pubSections/> </publicationData> <publicationData> <publicationCode>nr</publicationCode> <pubIssueName/> <pubArticleType/> <pubTopics/> <pubCategories/> <pubSections/> <journalTitle>Neurology Reviews</journalTitle> <journalFullTitle>Neurology Reviews</journalFullTitle> <copyrightStatement>2018 Frontline Medical Communications Inc.,</copyrightStatement> </publicationData> </publications_g> <publications> <term>15</term> <term canonical="true">21</term> <term>22</term> </publications> <sections> <term canonical="true">39313</term> </sections> <topics> <term canonical="true">258</term> <term>211</term> </topics> <links/> </header> <itemSet> <newsItem> <itemMeta> <itemRole>Main</itemRole> <itemClass>text</itemClass> <title>How PCPs Can Contribute to Epilepsy Care</title> <deck/> </itemMeta> <itemContent> <p>The Centers for Disease Control and Prevention (CDC) estimates that <a href="https://www.sciencedirect.com/science/article/abs/pii/S1525505023000999">1.1% of US adults have epilepsy</a>. Although 89% report seeing a physician in the past year about their condition, only <a href="https://www.epilepsybehavior.com/article/S1525-5050(20)30527-8/fulltext">62% of adults saw a neurologist or seizure specialist</a>. </p> <p>These findings prompted Rosemary Kobau, MPH, the acting team lead for the CDC’s epilepsy program, to take a closer look at <a href="https://www.epilepsybehavior.com/article/S1525-5050(21)00646-6/fulltext">referral patterns by primary care providers in the United States</a>. <span class="tag metaDescription">Using data from a 2018 online survey of US internists, pediatricians, family medicine physicians, and nurse practitioners, she found that 90% of providers would refer a patient with new-onset seizure to a neurologist.</span><br/><br/>She also noticed what she calls a “big red flag”: “We found that 40% of primary care providers did not indicate that they would refer their patient with epilepsy to a neurologist when their patient fails to respond to treatment, or if they have a change in seizure activity,” Dr. Kobau told this news organization. Individuals with <a href="https://www.sciencedirect.com/science/article/pii/S1525505014002054">uncontrolled seizures are at risk for multiple adverse health outcomes,</a> along with emotional problems, social stigma, and decreased life expectancy. <br/><br/>Factors that influenced primary care clinicians to refer to a neurologist included prompt availability of appointments, ability to talk to the neurologist, and whether a patient’s insurance covered specialty visits. Proximity of a specialist also was cited as a barrier, because neurologists can be hard to find outside of urban centers.<br/><br/>Wait lists for neurologist are not like to get shorter any time soon, according to a 2019 <a href="https://www.neurology.org/doi/abs/10.1212/WNL.0000000000012111">report from the American Academy of Neurology</a> (AAN). A 2013 workforce report from the AAN found <a href="https://www.academicpedsjnl.net/article/S1876-2859(18)30174-8/abstract">35 US states, representing 62% of the US population, had fewer neurologists than needed</a> to meet demand. By 2025, demand is projected to exceed supply in 41 states. <br/><br/>Much of the increasing <a href="https://www.neurology.org/doi/abs/10.1212/WNL.0000000000012111">demand for adult neurologists is driven by aging of the population,</a> resulting in higher rates of stroke, Parkinson’s disease, and dementia. But pediatric neurologists are also overwhelmed: <a href="https://media.amspdc.org/wp-content/uploads/2020/02/20234257/43-Rimsza-et-al-Workforce-Trends-and-Analysis-on-Selected-Pediatric-Subspecialties-in-the-US-1.pdf">Pediatric neurology is one of the top three pediatric subspecialties with the longest wait times</a>. The shortage is exacerbated by difficulties in <a href="https://www.medscape.com/s/viewarticle/transition-epilepsy-care-pediatric-adult-often-lacking-2024a1000241">transitioning adolescents</a> with epilepsy — many diagnosed early in life with neurodevelopmental and epileptic encephalopathy and problem lists that include learning disorders, behavioral issues, and other chronic medical problems — to adult epilepsy specialists. <br/><br/>Although one of the solutions offered by the AAN is more training in epilepsy management for non-neurologists (such as <a href="https://aesnet.org/education/for-non-epilepsy-specialists">CME programs</a> developed by the American Epilepsy Society), many primary care providers are overwhelmed already. Still, primary care providers are well-positioned to help answer some of the most important questions about the management of patients with seizure disorders. <br/><br/></p> <h2>How to Help</h2> <p>“There’s a lot the pediatrician can do when a child presents with seizures,” said Sucheta Joshi, MD, who serves as the medical director of the Neurological Institute Comprehensive Epilepsy Center at Children’s Hospital Los Angeles.</p> <p>Step one is helping to allay the fears of family members who witness a seizure. “They can talk about seizure safety, they can talk about first aid when a seizure happens, they can talk about what to do, what not to do,” she advised. Clinicians who see children can find resources for families on the American Academy of Pediatrics (AAP) National Coordinating Center for Epilepsy website, including a <a href="https://www.epilepsy.com/247-helpline">24/7 helpline</a>, information about local chapters of the <a href="https://www.epilepsy.com/local">Epilepsy Foundation</a>, and <a href="https://www.epilepsy.com/recognition/first-aid-resources">first aid training</a> for seizures. <br/><br/>Fred Lado, MD, PhD, a professor of neurology at the Zucker School of Medicine at Hofstra-Norwell in Hempstead, New York, said that primary care clinicians have several decision points when it comes to their patients with epilepsy.<br/><br/>The first is whether to initiate medication after the first episode of seizure. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4527147/pdf/i1535-7511-15-3-144.pdf">Studies show that the risk for a second seizure decreases in patients started on anticonvulsant therapy</a> after a first event, but many clinicians don›t want to commit patients to long-term therapy without more evidence that the patient has epilepsy. Studies have shown that delaying therapy until a second seizure occurs doesn›t negatively affect quality of life and long-term prognosis. <br/><br/>The International League Against Epilepsy (ILAE) advised treatment for patients with two or more unprovoked seizures but revised its recommendation in 2014 to begin treatment after a first seizure for individuals at high risk for a second seizure. History of a brain insult related to a stroke, mass lesion in the brain, or trauma are risk factors for a second seizure, whereas seizures provoked by a concussion, alcohol withdrawal, or exposure to toxins carry low risk for additional episodes.<br/><br/>Dr. Lado also raised the importance of taking a good history from a patient presenting for medical care for a new-onset seizure to determine whether the recent episode is really the first such incident.<br/><br/><a href="https://link.springer.com/article/10.1007/s11910-021-01161-8">Up to half of patients presenting to emergency departments for convulsive seizures have a history of a preceding nonmotor seizure</a> that the patient or their family members have failed to identify. As many as 60% of people with epilepsy have focal seizures, but the majority of these are nonmotor seizures. As a result, these patients often go without a diagnosis until they develop bilateral tonic-clonic seizures — by which time they may already been injured during a seizure or had an accident while driving.<br/><br/>In terms of imaging and other workup that should be performed prior to the first appointment with a pediatric neurologist or epilepsy specialist, Dr. Joshi generally recommends EEG. She also prefers MRI over CT, which is better for finding lesions that tend to cause seizures in kids such as developmental abnormalities like a cortical malformation or a perinatal process. Obtaining an MRI prior to seeing the neurologist is elective, depending on whether the history and clinical presentation suggest a focal lesion.<br/><br/>For adults, Dr. Lado also recommends an EEG and MRI to start but rarely advises other laboratory studies. When patients present to the emergency department with a new-onset seizure, the workup commonly includes a chemistry panel to rule out hypoglycemia or electrolyte abnormalities. But in the outpatient setting, where a patient describes symptoms of a seizure that occurred a week ago or longer, Dr. Lado said the yield of such assessments is low. <br/><br/>“I think the labs are often more useful as you’re thinking about an anticonvulsant,” Dr. Lado said. Particularly for a patient who is facing a long wait to see specialist, obtaining baseline liver enzymes and a complete blood cell count is worthwhile, because many antiseizure medications can cause anemia or liver damage.<br/><br/>Dr. Lado agreed that referral to a specialist is critical for patients with <a href="https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy">drug-resistant seizures,</a> defined by the ILAE as seizures that persist despite the use of two or more anticonvulsants. <br/><br/>“One of the great problems in epilepsy care is a sort of sense of complacency,” he said. Some of his own patients have become comfortable with their epilepsy diagnosis and profess to be untroubled by having a few seizures per year. In 2018, Dr. <a href="https://www.cdc.gov/mmwr/volumes/67/wr/mm6715a1.htm?s_cid=mm6715a1">Kobau was a co-author on a study</a> reporting that less than half of US adults taking seizure medications were seizure-free in the past year. <br/><br/>This scenario is an opportunity for primary care providers to help determine whether their patients are taking their antiseizure medication correctly. A referral to a specialist might not be necessary if the seizures are occurring because the patient’s prescription ran out. Similarly, if a patient doesn’t take the medication because of unpleasant side effects, raising the dose won’t help. <br/><br/>Dr. Lado’s advice is to explore why the patient’s management plan is not working and make adjustments tailored to their needs. The solution might be as simple as changing the patient to an extended-release formulation to lower the number of daily doses needed, he said.<br/><br/>But for patients who do have recurrent seizures despite good adherence, Dr. Lado strongly urges a referral to an epilepsy specialist. He serves as president of the <a href="https://www.naec-epilepsy.org/">National Association of Epilepsy Centers</a> (NAEC), a network of more than 260 epilepsy centers in the United States that offer the services of epileptologists, neurosurgeons, neuropsychologists, nurse specialists, EEG technologists, social workers, and others with training and experience in epilepsy care. In addition to adjusting and monitoring medications, patients seen at an NAEC can be evaluated for surgery, <a href="https://onlinelibrary.wiley.com/doi/10.1002/epi4.12070">neurostimulators</a>, and ketogenic diets.<br/><br/></p> <h2>Improving Self-Management</h2> <p>Another role that primary care can play is promoting self-efficacy among patients with epilepsy.</p> <p>“Providers have historically tended to focus on medication adherence alone, ignoring other health enhancing behaviors, even just sleep hygiene,” Dr. Kobau said. But adequate sleep, regular exercise, a healthy diet, avoidance of tobacco and excessive alcohol, and stress management are all important for seizure management. <br/><br/>In 2007, CDC launched the <a href="https://managingepilepsywell.org/">Managing Epilepsy Well (MEW) Network</a>, which has the mission of advancing self-management research in collaboration with patients with epilepsy as well as a broad range of healthcare providers. “It’s a patient-driven kind of approach consistent with community-based, participatory practice research,” said Dr. Kobau, who oversees the initiative.<br/><br/>The MEW network, which consists of <a href="https://managingepilepsywell.org/who-we-are">six prevention research centers</a> funded by CDC, has piloted and evaluated several <a href="https://managingepilepsywell.org/programs-overview">evidence-based programs</a> that can help patients better control their epilepsy. <br/><br/>One such intervention is <a href="https://managingepilepsywell.org/uplift">Project Uplift</a>, which delivers mindfulness-based cognitive-behavioral therapy in a virtual group setting. Behavioral therapy is important for people with seizure disorders, whose <a href="https://www.neurology.org/doi/10.1212/CPJ.0000000000000874">risk for depression</a> is more than twice that of the general population. The <a href="https://www.epilepsybehavior.com/article/S1525-5050(10)00532-9/fulltext">initial trial found the intervention was</a> effective in reducing depressive symptoms in participants, and research since has focused on adapting the program to provide culturally appropriate care to underserved populations. The eight sessions, held weekly, are available in both English and Spanish.<br/><br/>Another program, <a href="https://managingepilepsywell.org/hobscotch">HOBSCOTCH</a>, allows patients to meet one-on-one virtually with a trained coach to work on skills for improving attention and memory, common problems among people with epilepsy.<br/><br/><a href="https://www.epilepsybehavior.com/article/S1525-5050(14)00701-X/abstract">MINDSET</a> involves a tablet-based clinical decision tool that patients can use to track their self-management behaviors, such as taking their medications, seizure triggers, symptoms of depression, and keeping their clinic appointments. It also helps them monitor whether they are getting adequate sleep, reducing their stress, and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4727600/">maintaining social networks</a>. The tool generates a printable action plan for patients to prompt discussion and shared decision-making between patient and clinician to prioritize behavioral issues, set goals, and monitor changes over time.<br/><br/>Clinicians can refer patients to any of the MEW interventions, or patients can enroll themselves online.<br/><br/> </p> <h2>Emerging Approaches</h2> <p>The <a href="https://www.neurology.org/doi/abs/10.1212/WNL.0000000000012111">AAN’s 2019 report</a> promoted use of technological solutions to bridge the gap between primary care providers and scarce — as well as distant — neurologists. Many health systems support e-consults between clinicians, allowing simple discussions about medications and advice about testing recommended prior to a neurology visit. Initially developed for treatment for infection with hepatitis C virus, <a href="https://journals.sagepub.com/doi/10.1177/00333549071220S214">Project Extension for Community Healthcare Outcomes (ECHO)</a> uses a central hub of specialists to support primary care providers via teleconference to conduct case reviews and didactic sessions. </p> <p>Much of Dr. Joshi’s work has focused on ways to coordinate care to children who live far from a pediatric epilepsy center. In a previous position at the University of Michigan, her team was one of four sites funded by the AAP’s National Coordinating Center for Epilepsy to pilot an intervention using telehealth. Implemented in 2017-2019, the initiative used quality improvement methodology to explore a model where patients went to the office of their primary care provider so that both could participate in the call with a neurologist.<br/><br/>The strategy was successful, <a href="https://journals.sagepub.com/doi/10.1177/1357633X20969531">resulting in reduced out-of-pocket costs, missed school hours, and missed work hours</a>. Patient satisfaction was high (97%), and more parents in the intervention group than the control group agreed that it was easier to obtain appointments with specialists (95% vs 65%, respectively).<br/><br/>And since the pandemic, in-home telehealth visits have become commonplace, adding to the potential convenience and cost savings of telemedicine. <br/><br/>CDC has invested in Project ECHO as a training program for nonspecialist providers to manage epilepsy. Based at the <a href="https://www.cincinnatiecho.com/echo-neurology">University of Cincinnati,</a> the <a href="https://www.epilepsybehavior.com/article/S1525-5050(21)00023-8/abstract">initial pilot</a> from 2017 to 2019 trained primary care providers in Ohio and neighboring states using monthly 1-hour sessions via Zoom. According to Dr. Kobau, “Of those 164 primary care providers, 97% reported higher interest in improving their care of patients with epilepsy, and at least 98% reported that they were more confident in treating their patients with epilepsy.” Since that time, over 900 providers have received the training, which now attracts participants from all over the country.<br/><br/>Although the current burden of managing epilepsy now seems to be falling heavily on primary care providers, Dr. Lado said he believes they can provide useful insight into their patients’ history and needs: “I think they are in a unique and impactful position, mostly to refer those patients who are still having seizures.”<br/><br/></p> <h2>Additional Resources for Patients and Providers</h2> <ul class="body"> <li>American Academy of Pediatrics National Coordinating Center for Epilepsy </li> <li>American Epilepsy Society (CME courses designed to designed to increase knowledge about epilepsy diagnosis, treatment, and management; seizure first-aid; epilepsy stigma; and social determinants of health for people with epilepsy) </li> <li>Centers for Disease Control and Prevention .</li> </ul> <p>Dr. Joshi, Dr. Kobau, and Dr. Lado report no relevant financial relationships. </p> <p> <em> <span class="Emphasis">Dr. Thomas is a pediatrician and epidemiologist living in Portland, Oregon.</span> </em> </p> <p> <em> <span class="Emphasis">A version of this article appeared on </span> <span class="Hyperlink"> <a href="https://www.medscape.com/viewarticle/how-pcps-can-contribute-epilepsy-care-2024a100037r">Medscape.com</a> </span> <span class="Emphasis">.</span> </em> </p> </itemContent> </newsItem> <newsItem> <itemMeta> <itemRole>teaser</itemRole> <itemClass>text</itemClass> <title/> <deck/> </itemMeta> <itemContent> </itemContent> </newsItem> </itemSet></root>