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What's New on epilepsy.com/professionals?
Each month either I write an editorial or one of our Editorial Board members provides an opinion piece in our Just My Opinion: Thoughts from Epilepsy.com Editorial Board Members. I invite you to check out all of these and to sign up for our monthly newsletter so you don't miss any.
Please be sure and check out our Hallway Conversations podcasts. These are online radio shows where I interview peers on topics of interest to other professionals (and also patients). You can browse our past Hallway Conversations and listen to them at your convenience.
Be sure to keep any eye on our homepage for the latest news, announcements and event information for continuing education. Follow us on Twitter.
Joseph I. Sirven, MD
Epilepsy.com Board members and contributors cannot give medical advice by email. Only a doctor who has examined the patient and reviewed the medical records can comment on individual patient issues.
We welcome suggestions for additional types of material, but we do not have the capacity to respond to individual requests for information.
Just My Opinion: Thoughts from Epilepsy.com Editorial Board Members
My Epilepsy Diary - Why You Should Recommend it to Your Patients Joseph I. Sirven, M.D. |
Do your patients frequently forget to take their medications? When your patients recall past seizures, do you believe that critical details may be missing? Do you wish you could analyze the effectiveness of your patients' treatment plans using trend data over the long term?
Introducing My Epilepsy Diary, the new consumer health product from epilepsy.com!
Help your patients help you to obtain more complete and more detailed information about their epilepsy. Recommend that they adopt My Epilepsy Diary as part of their daily routines. Every time your patients experience a seizure, side effect, mood change, or other event relevant to their epilepsy, they can log into My Epilepsy Diary from a browser or smart phone and immediately document what occurred.
My Epilepsy Diary is pre-populated with many common scenarios, so creating new events and editing past events is fast and easy. The data is less error-prone than other record-keeping methods because patients are guided through a series of user-friendly Web pages. My Epilepsy Diary also allows multiple caregivers to submit entries for a single patient.
If your patients frequently forget to take their medicines, they can set up email or text message reminders. If they take additional medicines other than for epilepsy, you'll have those details at hand during the evaluation process.
Your patients can print out reports of events to date and bring them to doctors' visits. Each report contains not only recent seizures, but also historical trends that may indicate a change in the treatment plan. Non-identifying trend data can be used by researchers to accelerate new treatments, helping patients for whom current treatment options are ineffective in achieving seizure control.
Better quality data allows more effective treatment, a win for patients and caregivers as well as for doctors and nurses. Try My Epilepsy Diary today and recommend it to your epilepsy patients!
New on Epilepsy.com Professionals During November
During the month of November on epilepsy.com we will continue highlighting new topics and issues that arise from the epilepsy community. We have one "Hallway Conversations" that we will be highlighting this month.
Our program is devoted to the topic of "Post-tramatic Epilepsy". We will be speaking with Dr. Dan Lowenstein, Professor of Neurology, University of California, San Francisco.
Please look at the new Medication Compliance education program jointly sponsored by ETP and AES. This program is eligible for CME credit.
In addition we continue to update all of our other topic areas on the website and we hope that you will enjoy the various content features in epilepsy.com.
Joseph Sirven, M.D.
A Perfect World for Pilots Joseph I. Sirven, M.D. |
"A pilot lives in a world of perfection or not at all"
Richard S. Drury,
My Secret War
"Youll be bothered from time to time by storms, fog, snow. When you are, think of those who went through it before you and say to yourself, what they could do, I can do."
Antoine de Saint-Exupéry,
Wind, Sand and Stars, 1939
Happy April to the readers and viewers of Epilepsy.com! As we begin this month, much is ongoing in the world of public policy relevant to the issue of epilepsy. From March 29th through March 31, 2010, the Federal Aviation Administration (FAA) convened a neurological and neurosurgical summit conference to address policies regarding traumatic brain injury, cerebrovascular disease, migraine headaches and seizures and epilepsy as it relates to pilot licensure in the United States (US). The object of this meeting was to determine whether the current policies governing pilots should be revised or updated to reflect the best evidence from current ongoing understanding and knowledge of these conditions.
Currently, the policy set forth by the FAA for a pilots license states that an applicant with a diagnosis of epilepsy must be seizure free for 10 years and off medication for at least 3 years before consideration can be given for an Airman Medical Certificate. After a 10-year seizure-free period and 3-year medication free period, a full neurological evaluation and a normal EEG is required for consideration for licensure.
There are a number of regulations regarding a single seizure and licensure. If an individual has had a single event and it was a documented febrile seizure between the ages of 3 months and 5 years, no further evaluation is required. If a single seizure is determined to be secondary to a known pathological condition and the cause has been corrected, an applicant may be considered for an Airman Medical Certificate with as little as a 1-year recovery. A neurological evaluation will be needed prior to the issuance of a medical certificate, but no follow-up is required. If a single seizure was unprovoked and there is no satisfactory medical explanation of the cause, the required seizure and medication free period is 4 years. At the end of the 4-years, the applicant must provide a current complete neurological evaluation to include a current EEG. CT or MRI scans of the brain may also be required. Tonic-clonic type activity that occurs during an episode of fainting or syncope but is not a seizure does not require additional neurological evaluation. The same applies to similar activity experienced with gravity-induced loss of consciousness.
In light of recent diagnostic and therapeutic improvements for epilepsy, a number of policy questions arise. Is the current 10-year seizure free and 4-year medication free policy appropriate? Is the current 4 year seizure free without medication policy appropriate for patients who have had single seizures but no epilepsy risk factors including no family history of febrile seizures? For acute symptomatic events? How should guidelines be set for a patient with an abnormal EEG but without clinical seizures or what should the policy be following successful epilepsy surgery?
These are the questions that experts, whether they are clinicians or legislators, must address in order to make logical and rational decisions for individuals who are in jobs that involve public safety. One of the hopes of epilepsy.com is to always find ways to help improve the quality of life of patients. But what happens if improving the quality of life for an individual patient has implications for public safety, an issue that often arises in the field of transportation or health. The role of the physician and other healthcare professionals is to help decide what is the healthy and reasonable balance point between allowing someone to have the best quality of life that they can have, whether it means flying or driving versus balancing the risks to the public for that individual to have that quality of life. This is a complex issue and one that does not always have a clear and obvious answer. It is only through sound reasoning yet heartfelt exploration of the issue and making tough calls that any appropriate decision can be made. Personally, I applaud the FAA for reviewing and potentially revising policies that emerge from such a summit. However, not everyone will be happy with the conclusions that have been reached. As both quotes at the beginning of this column illustrate, the public demands a perfect safety record from pilots and there is very little room for error. In essence, pilots must live in a perfect world.
We hope that you enjoy the content that is provided during the month of April on epilepsy.com. We are excited with the 2 Hallway Conversations that are planned for this month. On April 7th, Dr. Ruth Ottman from the Columbia University Comprehensive Epilepsy Center will join us to discuss common comorbidities of epilepsy. This is work that she is presenting at the upcoming American Academy of Neurology Meeting in Toronto, Canada, and we look forward to hearing more. On April 21, we look to the future with Dr. Ruben Kuzniecky from the New York University Comprehensive Epilepsy Center. He will sit down and discusses in Spanish the latest upcoming clinical trials and potential forthcoming therapies and approaches to the management of epilepsy. We hope that regardless of whether you speak English, Spanish or any other language that you find this material on the Hallway Conversations or any part of epilepsy.com useful for you and your patients and we hope that at the end we are able to help improve the quality of life of all of our patients who have epilepsy.
Joseph Sirven, M.D.
March column from the Editor-in-Chief Joseph I. Sirven, M.D. |
"No matter how long the winter, spring is sure to follow."
Happy March 2010. As the beginning of a new month arrives, we have all dealt with a difficult and historic winter from a weather perspective. However, with the arrival of March, our thoughts turn to the beginning of spring. Mirroring our springtime hopes, is the similar promise for the delivery of new treatment for individuals who suffer with epilepsy. As we begin this month we concluded a highly successful Epilepsy Pipeline Conference which was held in San Francisco on February 25th and 26th. The conference was another hopeful sign that the spring of new therapies and new options for seizures will soon follow. In this conference, which was intended to promote innovation and novel treatments, a Whos Who of epilepsy scientists, clinicians, advocates, and individuals met with the goal of advancing epilepsy care. The conference began on February 25th with highlights from numerous companies and visionary individuals on their amazing ideas for the management of seizures. There is no shortage of potential options that are in the planning stages for management of seizures. Everything from devices that cool the brain; to wristwatches that are able to transmit seizure data to cell phones and other computer linked devices that can let physicians know what is ongoing with regards to their treatments in real-time was presented. This was followed by new approaches in basic science for being able to study epilepsy which in turn may help to elucidate new treatment options. On the second day, there was a discussion of the numerous medications that are currently in drug trials around the world. There were also discussions of potential markers for seizures that could revolutionize diagnosis by detecting epilepsy with a simple blood test to identify those individuals who have seizures.
As the conference ended, we hoped to have a year long version of this conference by the inauguration of the epilepsy pipeline wiki. To make this epilepsy pipeline conference live throughout the year and to make a useful resource for the epilepsy community, the Epilepsy Therapy Project is creating a new Epilepsy Pipeline Wiki which will be featured on the epilepsy.com website. The pipeline wiki will be created and edited by the epilepsy community and we are asking everyone out there in making this resource a reality. Our hope is that it will be a comprehensive and up-to-date review of every publicly disclosed new therapy, be it drug or device in the pipeline, and that this pipeline will help therapy developers to find the partners and financial resources necessary to making these new, exciting ideas a reality. The intent of the conference as well as the epilepsy pipeline wiki is about matchmaking and fostering relationships and collaborations among scientists, researchers, entrepreneurs, and investors in established companies so we hope our focus on the pipeline on the epilepsy.com website will accomplish these goals. Over the next several months, we will highlight throughout our various epilepsy.com platforms the various elements of the conference that occurred in San Francisco so that we are able to continually grow and learn and innovate our approach to seizures and epilepsy.
During March, we have two clinical-based hallway conversations that we hope that you find useful. On March 5th Dr. David Ficker, Associate Professor of Neurology at the University of Cincinnati Medical Center, addressed the issue anti-epileptic drugs, how do you choose amongst the numerous options that are available. On March 17th Dr. Michael Sperling, an international expert on the issue of epilepsy surgery, will sit down with us and discuss when is epilepsy surgery a viable option for a patient. We also hope that you will take advantage of all of the latest information as presented on the epilepsy.com website. As usual we hope that spring, which runs eternal, will help to cultivate the blossoming harvest of many new options and approaches for epilepsy and seizure management. We are very excited about what we have just heard at the Epilepsy Pipeline Conference and we look forward to helping engage the epilepsy community in making several of these novel ideas a reality.
Joseph Sirven, M.D.
December column from the Editor-in-Chief Joseph I. Sirven, M.D. |
As we approach the end of 2009, there a comes a moment for an assessment of all that has been accomplished over the previous 12 months. It has been an amazing year in the world of epilepsy treatment and diagnosis. Numerous new therapeutic studies have been published, medications have been advanced through trials and the promise and hope of future treatments for the scourge that epilepsy represents have been created. As we look over the past 12 months, it has been a rather significant year in the world of new medications for seizures. Three new agents, including Lacosamide, Rufinamide, and Vigabatrin have all been approved and released for use in the United States. There has not been a year with this many new medications available since 2000. In addition, there have been multiple new devices that are nearing completion of their pivotal trials for potential approval in the United States. Epilepsy has gained momentum in the public relations sphere with numerous stories devoted to the condition in prestigious and lay press venues, which have never reported on this condition in the past. In essence, what we are seeing is a season of hope. Clearly as 2009 draws to a close, there is a sense that progress is being made.
Yet despite the optimism, so much work remains to fully understand the various facets and forms in which seizures and epilepsy can present or impact someones life. In early December, the American Epilepsy Society Meeting convenes where thousands of epilepsy specialists consisting of physicians, nurses, neuropsychologists, psychiatrists, neurosurgeons, neuroscientists, and countless others convene to assess the latest in epilepsy knowledge, to teach what is currently known about the condition, and to ultimately find connections with other individuals to garner ideas so that we may find new ways to confront the challenges that this condition bestows. We are looking forward to Boston where the meeting will occur to appraise emerging treatments and review what new issues can be communicated to practitioners around the world so that we may be able to improve the lives of those individuals afflicted with seizures.
Over the course of December, Epilepsy. com will continue to highlight the new seizure diary, which has been quite popular for patients with epilepsy. This electronic record allows for individuals with epilepsy to keep track of seizures, their medications, and share this information with their physician or healthcare professional. It promises to revolutionize how we are able to track seizures, its impact on individual lives, and better optimize various treatments for patients. The site will also highlight recent findings from the American Epilepsy Society Meeting. We hope that Hallway Conversations, the new seizure diary, and all of the information that is housed within the Epilepsy.com site are useful for you and your patients. We wish you the brightest of seasons, a very happy new year, a safe holiday season! Peace and hope to all.
Joseph I. Sirven, M.D.
New on Epilepsy.com Professionals During December
The Epilepsy Research Foundation and the Milken Family Foundation have announced grants for two pioneering epilepsy therapies. The awards will fund a new anticonvulsant and a novel seizure treatment for newborns. Read the press release.
During the month of December on epilepsy.com we will be interviewing Dr. Jerry Shih, Assistant Professor of Neurology, Mayo Clinic Florida on the topic of Magnetoencephalography for epilepsy diagnosis.
Please look at the new Medication Compliance education program jointly sponsored by ETP and AES. This program is eligible for CME credit.
In addition we continue to update all of our other topic areas on the website and we hope that you will enjoy the various content features in epilepsy.com.
Joseph Sirven, M.D.
February column from the Editor-in-Chief Joseph I. Sirven, M.D. |
Happy February and Happy Valentine's Day!
Valentine's Day is always a time that we remember those around us who we care dearly about whether it be a patient or caregiver. We all want and strive towards good quality of life and epilepsy.com wants to help you help your patients achieve that goal. February is an exciting month for us as the Epilepsy Therapy Project will be holding its annual Epilepsy Pipeline Update Conference at the end of month in San Francisco. At this meeting, investigators will be highlighting the latest in drug treatment, device trials and any other potential therapies that can be aided by support from the Epilepsy Therapy Project in order to reach the market place faster and help health professionals such as yourself provide the highest quality care to your patients with epilepsy.
Quality medical care has become a rallying cry by government payers and all stake holders in the healthcare debate. Epilepsy specialists recently proposed eight quality metrics that will be recommended to be included in all encounters with patients with seizures by all physicians in the United States. The neurology community is now taking this process one step forward in including these metrics in maintenance of certification for all neurologists. As part of a project entitled "Performance in Practice (PIP)" the American Academy in Neurology is introducing an electronic survey system, for physicians to be able to assess their own medical charts for documentation that the measures deemed indicative of quality care in epilepsy are indeed being performed on a daily basis. The concept is to not only to help improve patient outcome by making certain that these outcome measures are being addressed in patient encounters, but also helping the physician be educated as to the latest guidelines, treatment strategies, and other opportunities for improving the quality of life of individuals with frequent seizures. The epilepsy PIP will be available in the second half of 2010 and will be soon followed by performance measures in a number of other common neurological conditions outside of epilepsy. The goal is for physicians who care for epilepsy patients lead by example in providing and documenting quality care to best help our patients.
During the month, we have scheduled two Hallway Conversations which will be most informative. On February 15th Dr. Elson So from Mayo Clinic Rochester joins us to discuss the latest in physiological imaging for epilepsy. How has SISCOM improved outcomes? What are the latest improvements for that particular procedure and how can that help patients with refractory epilepsy. On February 10, Dr. Elizabeth Waterhouse from the Medical College of Virginia in Richmond, VA joins us for a discussion on status epilepticus management. She will be specifically addressing new medications that have been introduced for the management of partial epilepsy. Will they be useful in the management of status epilepticus? She will discuss that and many other issues with regards to this emergency. We look forward to these interviews, to the pipeline conference and to the many other initiatives that are ongoing in the epilepsy community. To all of readers out there – Happy Valentine's Day! We hope that it is a special month, one that is memorable, pleasant, and we are able to help as many people as possible.
Joseph Sirven, M.D.
"Thoughts of Spring"
Spring has begun as evident by longer days, warmer temperatures, and the desire to put the long cold winter behind us. Summer is drawing near. More people are outside playing, walking, driving and enjoying the best of the outdoors. Our thoughts often turn to spring cleaning and personal renewal. For some people, this time of year is marked by looking for a fresh start; finding a novel approach to dealing with situations at hand. In individuals with epilepsy or their families, their attention is diverted to "What can I do to improve my seizure control?" or "How can I join the rest of world in their pursuit of happiness?" At Epilepsy.com/Professionals, we have some answers to these questions.
Given that April marks the beginning of Spring, our focus on Epilepsy.com/Professionals during this month is on ways in which health care professionals can best help their patients in potentially curing their epilepsy. Because surgery is the only known way to effectively cure seizures in some individuals, our focal point is epilepsy surgery. Three Hallway Conversations devoted to the topic of curative procedures for epilepsy are scheduled. On April 9, Dr. Jeffrey Buchhalter of Phoenix Children's Hospital in Phoenix, Arizona discusses the issue of Epilepsy Surgery in Children. At which point should surgery be considered? What are the complications and what are the ramifications for school, growth and socialization?
Noninvasive surgical techniques are an area of medical growth and innovation. How to perform surgery without using a scalpel has become a goal of sorts for both patients and surgeons. Along that theme, on April 16, we talk to Dr. Paul Garcia from the University of California at San Francisco regarding a novel alternative to resective surgery; radiosurgery. There are large multicenter trials currently enrolling patients in the United States to address whether this non-invasive technique to render someone seizure-free may be employed and may lead to better results as compared to traditional resective surgery. We hope to understand thinking and experience about the idea of radiation therapy for epilepsy by talking to a leading clinical researcher on the technique.
On April 23, 2009 Dr. Gregory Cascino from Mayo Clinic in Rochester, Minnesota sits down with us to discuss epilepsy surgery in adult patients. What are the risks? Who should be monitored? Are there new techniques for monitoring and conducting surgery that leads to better and safer results for patients? What are the ramifications to not operating and are there any pitfalls that we need to be concerned about? Some interesting new information about how epilepsy surgery can improve life expectancy will also be addressed. We hope that you find Hallway Conversations and Epilepsy.com/Professionals useful and helpful for you and your patients in order to help maximize the quality of life for the patients whose care we have been entrusted to deliver. For more information on surgery for epilepsy visit the section on the topic at http://professionals.epilepsy.com/page/surgery.html
Joseph I. Sirven, MD
Epilepsy.com Board members and contributors cannot give medical advice by email. Only a doctor who has examined the patient and reviewed the medical records can comment on individual patient issues.
We welcome suggestions for additional types of material, but we do not have the capacity to respond to individual requests for information.
Risks and Benefits of Epilepsy Surgery: Are We Missing A Boat?
Orrin Devinsky, MD
Dept of Neurology
NYU Langone School of Medicine
Medical disciplines are celebrated for their successes, defined by their challenges and haunted by their failures. Epilepsy surgery, a long and deep partnership between neurosurgery and neurology, has pockets of progress punctuating a field with little movement. Advances in neuroimaging and neurophysiology/invasive electrode monitoring have expanded the diagnostic arsenal. Novel stimulation and direct-to-brain drug delivery paradigms form an exciting pipeline to future therapies. Yet, it is frustrating to review Penfields outcomes from 50 years ago and wonder just how far we have come.
Unilateral temporal lobe epilepsy and extratemporal lobe epilepsy due to localized lesions are the success stories of epilepsy surgery, with seizure-free rates over 60%. In highly selected groups (e.g., patients with mesial temporal sclerosis on their non-dominant side and concordant seizure onsets), seizure-free rates exceed 80%. Among the estimated 500,000 US and 10,000,000 worldwide cases of medically refractory partial epilepsy, less than a third have unilateral temporal lobe epilepsy or extratemporal epilepsy with well-circumscribed lesions. What about the other two-thirds?
The past decade documents some improved outcomes that largely reflect improved patient selection. But improved outcome for who? And for the two-thirds who are not offered surgery, is it really better patient selection? Perhaps the goal should be to seek a lower percentage of seizure-free outcomes. Our target population should be widened, away from the sweet center of unilateral temporal lobe and extratemporal cases with localized lesions, to include those who are less likely to achieve seizure freedom.
The field of epilepsy surgery focuses on seizure-free outcome as the marker of success. But have we ignored palliation, the opportunity to improve quality of life through a reduction of seizure frequency and medication burden. For the approximately majority of patients with medically refractory partial epilepsy who are not good candidates for epilepsy surgery, we need to deeply reconsider our definition of good candidate. How did we come to decide that seizure freedom was synonymous with surgical success?
Epilepsy surgery shares with cerebral tumor and other neurosurgeries, a spectrum of disease substrates and a range of respective acceptable outcomes. These outcomes range from permanent alleviation of the disease to palliation or prolongation of the time to recurrence of the disease process. What all of these therapies share is the intention to improve the patients quality of life. Yet epilepsy surgery, unlike tumor surgery, is perceived as failing unless seizures are completely controlled. Our current demands for epilepsy surgery success restricts patient selection, being analogous to restricting tumor surgery to only benign or low-grade tumors. Evaluating success based solely on seizure resolution may deny therapy to patients who may gain worthwhile improvement otherwise. As epilepsy surgery becomes better refined are patients being excluded from consideration?
Who are these patients with refractory partial epilepsy whose seizures are frequent enough to restrict their lives, who have tried and failed multiple antiepileptic drugs and drug combinations; who live with ongoing seizures and side effects? For many, epilepsy is a progressive disorder, with deteriorating cognitive and behavioral function, increased rates of suicide and sudden unexplained death (SUDEP). Memory, attention, mental processing speed, executive and language functions, and social skills can all decline over the years of seizures pounding on the brain. Depression, anxiety disorders, psychosis all become more frequent with chronic epilepsy. Perhaps most startling are the rates of SUDEP. Among patients with refractory epilepsy who are considering surgery, the yearly rate of SUDEP is between 0.5 and .9%. Over a decade, that is a 5-9 rate. That does not include deaths from drowning, driving, accidents, and other causes. We need to re-examine the benefits as well as the risks of the status quo.
Epilepsy surgery is definitely not for everyone with refractory partial epilepsy. Many patients have multiple or widespread foci that overlap with functional cortex. Surgery could leave a permanent deficit without any benefit. Yet some patients with two or even three seizure foci can benefit when one or two main foci are resected. Seizure frequency and severity may be reduced by 50% or more. Hardly a cure, but a better place. And for some, potentially life-saving. Our challenge is to increase the frequency of seizure free outcomes, but also help patients who cannot currently achieve seizure freedom.
The field of epilepsy surgery needs to move beyond the myopic focus on seizures. Yes, well designed studies have examined deficits in naming and short-term verbal memory after dominant temporal resections. Yet, what do we know about real life executive and social functions after frontal lobe resections? Not much. More recent studies have addressed employment, quality of life, and mood. However, we have ignored or avoided questions that Penfield raised a half century ago concerning the epileptic substrate that he believed caused adverse inter ictal effects.
Nociferous cortex is defined as dysfunctional epileptogenic tissue that fails to perform its normal functions and impairs the function of other brain areas. Penfield and Jasper introduced the concept of nociferous cortex in describing the dramatic behavioral improvements after hemispherectomy in an aggressive boy: Among patients who have large areas of abnormality in one hemisphere, abnormal behavior may appear, together with advancing mental retardation. The behavioral abnormality is often a more important complaint than the seizures themselves. Radical complete excision may correct the abnormal behavior, stop the seizures, and allow improvement in the patients mental state. How do we systematically identify both deficits and improvements after epilepsy surgery? What can we do to predict postoperative cognitive and behavior changes before surgery? Restricted epileptogenic foci can be nociferous. For example, non-dominant anterior temporal lobectomy can improve verbal memory. Temporal lobectomy can improve metabolic functions ipsilateral and contralateral to the seizure focus, cortically and subcortically. Preoperative depression and anxiety often resolve after ATL.
Excellent surgical centers may improve outcomes through diagnostic and therapeutic advances as well as more restrictive patient selection. We must address the problems faced by those epilepsy patients who do not meet the more rigorous selection criteria. As epilepsy surgery becomes better refined are patients that would benefit from surgery being excluded from consideration?
Make sure to check out our other new offerings during the month of June on Epilepsy.com Professionals
Hallway Conversations will highlight new devices for epilepsy therapy during the month of June:
Under Resources, look for the Journal watch section, your one stop site for the most pertinent websites for new epilepsy research articles.
Check out the new Epilepsy books section highlighting the latest epilepsy related textbooks with access to amazon. Com for purchasing the books of interest. We hope that you find of the content helpful and useful for your practice.
Transition and Transfer: the rocky road from pediatric to adult epilepsy care Peter Camfield MD, FRCP(C) Carol Camfield MD, FRCP(C) |
A wise senior child neurologist suggested to us that if we did our job properly in pediatric epilepsy there would be no one to pass along to our adult colleagues. We wish it were so simple! About 50% of epilepsy that begins in childhood persists into the adult years. In our experience, the two biggest groups are patients with mental handicap (with a variety of epilepsy syndromes) and patients with idiopathic generalized epilepsy, especially Juvenile Myoclonic Epilepsy. There are others with cryptogenic or symptomatic partial epilepsies whose disorder resembles the partial epilepsies of adulthood.
It is not easy to successfully navigate adolescence with persistent epilepsy. The epilepsy adds special restraints – regular sleep hours, regular medication, no alcohol, and some restrictions on activities, especially driving, uncertainty about contraceptive efficacy for girls. Epilepsy is a hidden handicap that can only be understood by others if they are told about it. Yet, we know that more that 50% of US teenagers would not date someone with epilepsy and view epilepsy as a mental illness. So how would you develop the courage to tell others?
Pediatric epilepsy care is family focused. Adult epilepsy care tends to be focused on the individual. When you are child, your parents make sure that you don't forget your medication and direct you to go to bed early. Your doctor concurs with this approach. When you are an adult, you learn that all this is your choice, but you may not understand the consequences of poor compliance or poor lifestyle choices. Your adult doctor may not seem to care as long as you understand the facts and make your choices.
Simple transfer from pediatric to adult is potentially brutal (1). The child, now adult, does not understand his/her illness well – much of the family instruction was years ago and directed to the parents. The adult epileptologist only has a case summary and is unlikely to really understand how much of a burden epilepsy is to an adolescent, even if the seizures are well controlled.
Transition from pediatric to adult care is conceptually more attractive. Transition means that the adolescent, family and adult epileptologist all learn the critical steps to allow the youth with epilepsy to be treated in the adult world. Transition is a process that takes time and needs to begin in the pediatric setting. The adolescent learns what they need to know to explain their disorder. They learn the names of the drugs, the doses, the side effects and what needs to be done to fill a prescription. They understand that they have epilepsy but are not "epileptic". Transition for epilepsy care can take many forms but is virtually undescribed in peer-reviewed literature. Without any data to support our contention, we think that a transition clinic that is staffed by both adult and pediatric epilepsy specialists is needed. A number of joint adult/pediatric visits should take place until transfer to adult care is deemed appropriate. The family needs to see that the pediatric team is still involved and that communication with the adult team is complete. The adult team needs to understand at what stage this particular adolescent is in the process of becoming an adult and design a therapeutic approach that is appropriate. If the adolescent is still in the "invulnerable stage" (nothing bad can happen to me), then more family involvement is needed. The pediatric team needs to "back off" to allow the adolescent to take responsibility.
The situation is quite different when the adolescent/youth has mental handicap. It is worth remembering that possibly 50% of epilepsy that starts in childhood and persists into adulthood is accompanied by mental handicap. Now parents and guardians must have an ongoing supervisory role. But, how much is too much and how much is too little?
Pediatric epilepsy specialists should have a fairly good understanding of how much independent judgment by these special adolescents is possible. This is likely more difficult for the adult neurologist. And where do the parents fit in? Suddenly, the individual focused adult health care system breaks down because the patients with mental handicap cannot represent themselves completely.
Parents have many years of trust in the pediatric system and need to be convinced that the adult system is equally nurturing, but it rarely is. They know when things are not going well but they may not know what to do about these issues in the adult system. Eventually the parents will need to surrender this responsibility to someone else – a guardian or an institution. So, the transition is more for the parents than the patient. The adult physician has few models and little experience in this arena. We often hear from our adult colleagues that they like children but could not deal with parents. If the child is mentally handicapped, there is no escape from the parents. In our experience, parents of a mentally handicapped adolescent with longstanding epilepsy are often very reluctant to take adult neurology advice – a new drug or consideration of an operation is threatening. They have come to accept a status quo that may not be acceptable in the eyes of the adult team.
Pediatric epileptologists also are giving up years of continual medical care for the patient and a long-standing friendship and bond with the family. Helping them cope over time is one of the main joys of pediatrics – and to lose this connection is hard. There is a transition for the pediatric epilepsy specialist also!
We are aware of few publications about transition and epilepsy. One paper describes a very personal transfer of care – the pediatric epileptologist and the adult epileptologist met together once with the family (2). There was no outcome measure – just a description of the process. Another paper describes an epilepsy adolescent clinic and some of the changes in medical prescriptions (3). Frankly, the literature in other chronic diseases of childhood is not much better. We know that in youth with diabetes and asthma often the transfer does not take place properly and the young adult may go without medical care for many critical years. Family physicians have not been very involved in the child's care and in the eyes of the family are generally not significant contributors to ongoing care. For youth with epilepsy that persists into adulthood, we know that the social outcome, even for those with normal intelligence, is unsatisfactory in 30-50%. We know that for those with serious mental handicap and persistent seizures, adult neurology visits are relatively rare and newer medications are typically not prescribed. In summary, the epilepsy community handles transition or transfer of care poorly.
What needs to happen? Every centre needs to identify one or more adult epileptologists who are willing to participate in a structured transition clinic. Willingness must mean not just the prescription of medication but also major efforts at education, social integration and rehabilitation. Obviously, such an approach does not guarantee success, but it should be better than what we are currently doing.
Epilepsy.com/Professionals Announcements from Joseph I. Sirven, MD, Editor-in-Chief
Happy Fourth of July!!
I hope that you are enjoying the summer. Please join us for our other offerings on Epilepsy.com/Professionals this month. Check out Cognition Across the Lifespan: Antiepileptic Drugs, Epilepsy, or Both? It is a Roundtable discussion webcast hosted by Joyce Cramer, President of the ETP featuring discussion with Bruce Hermann, PhD, Kimford Meador, MD and William Gaillard, MD.
We continue with our Hallway Conversations this month with three scheduled interviews: July 6, we speak to Alison Pack, MD about epilepsy and bone health. On July 13, we offer 2 Hallway Conversations: Katherine Noe, MD, PhD discussed her recently published study on safety! in the Epilepsy Monitoring unit and Selim Benbadis joins us to talk about the latest findings in the management of Nonepileptic/ Psychogenic seizures.
Announcing New Grant Opportunities – Letters of Intent Due August 3
New grant opportunities are being made available through the Epilepsy Research Foundation's New Therapy Grants Program. These will be awarded to scientific and clinical investigators pursuing innovative projects that demonstrate a clear path to commercialization. To view the request for proposals and to apply, please visit www.epilepsy.com/etp/grant_application.
Reviewed by Joseph I. Sirven, M.D., Editor-in-Chief
Submitted June 30, 2009
Medical Errors in Epilepsy — Redemption Joseph I. Sirven, M.D. |
Recently I had the opportunity of attending an institutional Medical Grand Rounds on a rather provocative topic. The lecture entitled" Medical Redemption" consisted primarily of physicians telling stories of medical errors that they had committed in the presence of patients who had been the subject of these errors. The point was to examine the issue of medical errors from two vantage points; physician and patient. If I had been a malpractice attorney, I would be in a state of disbelief and shock to witness an open discussion of one of the most emotionally fraught and legally complicated topics that can confront a medical professional. As I listened to their stories, I was struck by a few observations. Physicians who committed the errors were riddled with guilt out of proportion to the patients' expressions of anger over the error. Patients seemed to be forgiving even when the consequences of the error were quite serious and long-lasting. Admitting the error appeared to relieve the patient and physician from the burden of anger and guilt respectively. It seemed that the old dictum that "It isn't the crime that creates problems, but it's the cover up" seemed to be a reality in the field of medical errors at least from my perspective as an attendee.
This led me to wonder about my own medical errors over time in the care of patients with epilepsy. I have personally never seen any literature or been privy to nonconfidential conversations of specific instances of medical errors as it pertains to epilepsy management. Attorneys often counsel that admitting a mistake publicly has legal implications and therefore the topic is somewhat taboo. However, we are certain that it occurs. Attendance at any hospital morbidity and mortality conference can confirm it. I too can profess to having committed a medical error which I have had to address with a patient and I have been personally forgiven by the patient. However, I was lucky as there were no long lasting untoward effects as the result of the error. Nevertheless, errors have consequences and oftentimes the patient will look for their care elsewhere after such an admission.
So how often do medical errors occur in the US? In November 1999, the Institute of Medicine issued a report entitled "To Err is Human; Building a Safer Health System" addressed this issue and the statistics were staggering. The authors found that as many as 44,000 to 98,000 people died in hospitals every year as a result of medical errors. By using the conservative estimate of the extent of the problem, medical errors would actually rank as the eighth leading cause of death in the United States, higher than motor vehicle accidents, breast cancer, and HIV. 7,000 people a year are estimated to die from medical errors. Errors are not restricted to hospitals but they occur in any healthcare settings such as physician offices, nursing homes, pharmacies, urgent care centers and care delivered in the home. The costs of these errors are in the billions of dollars.
To date there are no estimates that delineate the extent or cost of medical errors in the field of epilepsy. However, one can make an educated guess based on several papers that have courageously addressed the allied topic of complications as a result of specialized epilepsy care. Most notable are those from Noe and colleagues, reporting 21% of epilepsy monitoring units had some type of adverse event and from Hamer and colleagues, reporting the complication rate from invasive EEG monitoring. However these are complications that may be expected and would not be considered an error based on the definitions from the Institute of Medicine. Therefore the extent of the problem in epilepsy is not known.
So how should physicians address medical errors when caring for patients with epilepsy? If one accidentally overdoses a patient with extra anti-epileptic medication which results in toxicity or an unusual complication, does the physician or healthcare professional take the blame? Does one call the patient? How will the patient/physician relationship be altered as a result of this admission and can it ever really recover? The answers to these questions are not known, but intuitively honesty appears to be the best policy with regards to one's admission of errors when they occur. More study is clearly needed for the best approach.
So as I sat in the audience anonymously in a cavernous auditorium listening to patient and physician stories, I was struck by how fragile the patient/physician relationship really is. The same trust issues that typify a partnership, a marriage, a friendship are the same ones involved in the relationship between physician and patient. One has to be honest, open and caring with regards to how information is presented. Communication is essential and yes legal counsel is sometimes needed. I suspect the issue of medical errors will remain an unspoken issue but it is important to understand how difficult the issue is for both patient and physician.
New on Epilepsy.com Professionals During October
During the month of October on epilepsy.com we will continue highlighting new topics and issues that arise from the epilepsy community. We have three "Hallway Conversations" that we will be highlighting this month.
Our first program addresses the launch of the My Seizure Diary. Robert Fisher, MD, PhD the diary's authors will explain and discuss the utility of this innovative new tool which could revolutionize the clinic visit.
Our second program is devoted to the topic of "Non-epileptic Events and Their Management". We have two neuropsychologists, Dr. Kristin Kirlin and Dr. Dona Locke, who will be discussing the psychological management of this condition and what clinical advice can they impart to neurologists and epilepsy physicians in order to better the care of the patient with non-epileptic events.
We also will be highlighting the issue of epilepsy monitoring. Epilepsy monitoring is a cornerstone in the evaluation of patients with seizures and is often one met with concern and anxiety on the part of the patient when they are being admitted to the video monitoring unit. Given that patients do not want to have their seizures, it seems somewhat contradictory that one is being admitted to a hospital in order to suffer the event that seems to rob patients of their independence and their quality of life. As such we want to examine the epilepsy monitoring unit environment, dispel any myths and present why it is done and some of the issues that the patients and professionals can understand about epilepsy monitoring as a whole. During a special "Hallway Conversations" Dr. Korwyn Williams from Phoenix Children's Hospital and Dr. Joseph Drazkowski discuss the topic of epilepsy monitoring in both adults and children.
In addition we continue to update all of our other topic areas on the website and we hope that you will enjoy the various content features in epilepsy.com.
Joseph Sirven, M.D.
Medication Management Joyce Cramer |
Do you take your medication the way you expect your patients to take theirs?
Doctors are notoriously unreliable in following medical instructions, particularly taking medication. Healthcare professionals have the knowledge to understand the importance of preventive and symptomatic treatment; they know what health behaviors should be accomplished regularly (e.g., diet, exercise, medication); they understand the mechanisms of action and pharmacology of medications; they have the intelligence to plan and the self-regimentation to maintain a pattern of personal healthcare. True, but unrelated to actual behaviors. Of course, some healthcare professionals do follow the advice they give to patients, but not all. The Doctors Health Study revealed that a large proportion of doctors who volunteered for the study were not eligible for randomization because they were so poorly compliant with the dosing during the placebo run-in phase.
Kastrissios et al.1 asked medical students to take Tic Tac candy pills for two weeks, in a BID or TID regimen. They discovered that only 2/3 of doses were taken as agreed, 47% of doses were taken at the prescribed frequency (BID or TID), and 29% were taken at the prescribed intervals (hours apart). The Physicians Health Study II was designed to assess the efficacy of vitamin C, vitamin E, beta-carotene, and a multivitamin in reducing cardiovascular risk. Doctors who enrolled were sent calendar packs containing placebos of all four of the study drugs. Of the 11,128 willing to participate, only 7,001 (63%) took the pills regularly during the baseline (placebo run-in phase) and said they wanted to continue with the study2.
I wrote an article for www.epilepsy.com geared toward patients called: "The Titanic Impact of Medication Compliance on Epilepsy"3 to explain that seizures may be related to missed doses, inadequate scheduling, and other remediable factors. Forgetfulness remains the main reason people report for missed doses, not unexpected for people commonly having memory difficulties. Rather than expecting patients to accommodate to know how to take their medication, or to use dosing schedules that are not convenient, try to adjust the medication to what the patient will be able to accomplish.
Of course, its difficult to counsel patients on medication management unless you know a few methods to impart to patients. Watch for a new CME program next month with tips on how to teach patients approaches to taking their (essential) antiepileptic drugs.
Epilepsy.com/Professionals Announcements from Joseph I. Sirven, MD, Editor-in-Chief
First of all we want to acknowledge and Congratulate the Epilepsy Research Foundation New Therapy Grant Awardees. These Grants are what the Epilepsy Therapy Project are all about.
July 2009: Epilepsy Research Foundation New Therapy Grant Awards
Grant: Safety Profile of the Subdural Hybrid Neuroprosthesis for Focal Epilepsy
New York University School of Medicine
New York, NY
Ludvig Nandor, MD, PhD, Associate professor at the New York University School of Medicine received a grant to determine the safety of a new medical device, the subdural Hybrid Neuroprosthesis, for the treatment of drug resistant, surgically untreatable focal epilepsies. The device will deliver muscimol or other seizure-controlling drugs directly into the cortical seizure focus via the subdural space to prevent seizures without side-effects. The safety of this emerging epilepsy therapy will be tested in monkeys so that the device can be implanted in the same way as in humans, and generated data can be relevant to human conditions.
Grant: Clinical EEG Acquisition Systems with Online Fast Ripple Detection
Columbia University Medical Center
New York, NY
Catherine Schevon, MD, Assistant Professor at Columbia University Medical Center received a grant to develop a practical intracranial EEG recording system that will bring the additional information that can be gained from evaluation of high frequencies into clinical practice, thus increasing the efficacy of the current surgical treatment of medically refractory partial epilepsy. By increasing the specificity of the identification of the epileptogenic region, seizure outcomes can be improved while the area of brain that must be removed is minimized. In addition, a biomarker that is reliably present in interictal recordings could obviate the need for prolonged implantation. This technology may even make possible single-stage surgical procedures for neocortical epilepsy syndromes, a therapy which currently is not available to most patients with medically refractory epilepsy.
Check out this month's featured online roundtable: Cognition Across the Lifespan: Antiepileptic Drugs, Epilepsy, or Both? with guests Dr. Bruce Hermann, Dr. Kimford Meador and Dr. William Gaillard, and hosted by Joyce Cramer, President, Epilepsy Therapy Project.
Please Join us for our September offerings on Epilepsy.Com/Professionals. During this month, we begin a special series of Hallway Conversations relating to the 22nd Annual Arizona Epilepsy Update which is scheduled for November 6, 2009. As part of the symposium, we will be highlighting the various talks by speakers at the conference. This month, Dr. Hemant Kudrimoti from the University of Arizona will be discussing Generic antiseizure medications and Dr. Steven Chung from the Barrow Neurological Institute will be talking about New Antiseizure medications and how to choose between them? Lastly, Dr. Katherine Noe will be discussing Women's Issues and Epilepsy. We hope that you join us for these Hallway Conversations and take full advantage of all of our offerings.
Joseph Sirven, MD
1 Kastrissios H, Flowers NT, Blaschke T0046. Introducing medical students to medication noncompliance. Clin Pharmacol Therap,1996: 59, 577582.
2 http://phs.bwh.harvard.edu/phs2.htm
Reviewed by Joseph I. Sirven, M.D., Editor-in-Chief
Submitted August 31, 2009
"Whats New on Epilepsy.com Professionals in May?"
Over the past few weeks, there has been a considerable amount of media attention devoted to the field of epilepsy. A major cover story on epilepsy by Newsweek magazine on April 11, 2009 was followed by the publication of a major study in the New England Journal of Medicine linking valproic acid use to lower IQ's in children of mothers who had taken the agent for epilepsy during their pregnancy. This led to the admission of celebrities like Prince admitting to having suffered from childhood seizures. On May 1, new clinical guidelines were published in Neurology regarding epilepsy management during pregnancy. These new guidelines which are jointly authored by the American Academy of Neurology and the American Epilepsy Society provide clinicians with several recommendations that can help decrease the risk of a complicated pregnancy. These recommendations also reaffirm that valproic acid should not be prescribed to women who are pregnant because it may cause fetal malformations and impair cognition in children of women who take the drug while pregnant.
The guidelines also go on to urge that whenever possible, women with epilepsy should not take more than one anti-epileptic drug at a time during pregnancy because it may increase the risk of birth defects. Pregnant women with epilepsy should have blood tests for anti-epileptic drug levels on a regular basis. Levels of anti-epileptic medications may decrease in the course of the pregnancy and regular testing will help detect when doses of the medication should be adjusted. If possible doctors should avoid prescribing phenytoin and phenobarbital to women of childbearing age with epilepsy in an effort to lower the chance of cognitive problems in children. Women of childbearing age taking these medications should always consult their physicians which should include their neurologist and obstetrician before making any changes to the medication regimen. The link to the clinical guidelines is below and we encourage all readers of the site to familiarize themselves with the paper.
Download the paper here. (PDF)
On a very different topic, May is also the unofficial beginning of the summer season. During summer, there is a marked increase in driving. After all, vacation season is upon us, children are out of school and there is desire to explore the outdoors. In the latter half of the month, we devote our Hallway Conversations to the issues of transportation and epilepsy. On May 6th, Dr. Allan Krumholz from the University of Maryland Medical Center, joins us on Hallway Conversations to discuss the issues of driving and epilepsy. On May 13th, Dr. Joseph Drazkowski in the Division of Epilepsy at Mayo Clinic Arizona, joins us to talk about how are driving laws evolving, what is research telling us and what are some of the suggestions in terms of helping people manage the issue of driving with their condition. Given that this is often an emotionally charged conversation with most patients, it is important to understand and grasp the fundamental issues that arise in this type of encounter. Lastly, on May 20th Jack Hastings, who is a consultant to the Federal Aviation Administration, joins us to discuss flying and epilepsy. What are the issues if a patient with seizures is about to embark on a journey involving a plane? What suggestions should we as physicians give our patients? and what if our patient wants to actually pilot a plane, what are the rules and how should we advise them?
Thus, as you can see we have a varied month of offerings in this month's epilepsy.com/professionals. At the beginning of the month we concentrate on the issues of epilepsy and pregnancy with important new guidelines and research to support some of them. In the second half of the month the focus is on driving, flying and transportation. We hope that you find all of this helpful for your daily practice; we hope you join us for our hallway conversations, download our podcasts, read our materials and at the end hopefully improve the quality of life of all of our patients with epilepsy.
Joseph I. Sirven, MD
Epilepsy.com Board members and contributors cannot give medical advice by email. Only a doctor who has examined the patient and reviewed the medical records can comment on individual patient issues.
We welcome suggestions for additional types of material, but we do not have the capacity to respond to individual requests for information.
The (Potential) Problems with Generics in Epilepsy Carl Bazil MD, PhD |
In the past year or so, new generic equivalents have been approved for lamotrigine, topiramate, oxcarbazepine, and levetiracetam. While this is good news in that cost consciousness is always an issue in medicine, and generic equivalents usually offer substantial savings, there is still concern that epilepsy is a condition where more caution should be exercised.
The American Food and Drug Administration sets strict standards for the approval of generic equivalents. Each must be compared to the approved brand-name drug in normal volunteers to ensure that two measures, Area Under the Curve (AUC, a measure of total drug absorbed) and Cmax (the peak concentration) are comparable. To do this, single doses of the proposed generic are tested against the brand name drug. The 95% confidence interval for each of these measures must fall between 80 and 125% of the branded drug. Usually, that translates into an average variability of 3-5%. For most conditions, this would be an insignificant amount. Think of a headache: if a 600 mg generic ibuprofen actually delivers only 570 mg, that probably doesn't translate into a major problem for the patient. At worst, the headache may last a bit longer, or another dose would be needed.
In epilepsy, there is a relatively narrow therapeutic window that must be maintained for extended periods of time. Too much, and the patient experiences toxicity. Too little, and a seizure may occur. So the consequences of a slight fall in delivered dose may be severe: a patient who was seizure free may have a sudden seizure, potentially resulting in injury, loss of driver's license, or even death. Under most circumstances we wouldn't expect a 5% change to cause this. However, there are other, at least theoretical reasons that that variability could be greater. First, generic equivalents are tested in normal volunteers. Epilepsy patients may have greater differences in absorption or metabolism due to their condition or to concurrently administered drugs. Second, generic agents are not tested against each other (only to the brand). As there are multiple, sometimes dozens, of approved generic manufacturers for each epilepsy drug, this results in increased potential for variability; each time the patient returns to the pharmacy, a generic equivalent from a different manufacturer may be dispensed. The roughly 5% variability compared to the brand could then become a 10% swing from one generic to another. A handful of states (including Hawaii and North Carolina) have limited changes in generic manufacturers dispensed to a given epilepsy patient. Several others (Florida, Kentucky, Maine, Maryland, Minnesota, Missouri, and Rhode Island) limit substitution for drugs , however the practice of substitution is still the norm.
How often do problems occur? We really don't know. While most neurologists have anecdotes of a problem resulting from a generic switch – a sudden seizure in a previously controlled patient being most common – it is often difficult to prove it is due to the generic substitution. We all certainly see patients with unexplained seizures without a change in brand. There are a few cases where the time course and documented changes in levels make generic change the likely culprit but these are rare.
Generic equivalents in epilepsy are not unreasonable, however should be used more cautiously than in other conditions. How can we best protect our patients? First is with education: when a generic is available, alert the patient that a change in the appearance of the drug likely means generic substitution. Possible changes should be discussed with a patient, whether from brand to generic, generic to brand, or between different generics though the latter may be the most difficult to control. Get baseline levels on all anticonvulsant drugs when the patient is stable; this way if a problem arises it will be easier to know if a result of a brand change. And when generic equivalents are used, ask the patient to work with a pharmacist to stay with a single manufacturer. Some will be willing to do this, further reducing the potential for variability. Finally, when a suspected problem arises physicians should report to the F.D.A. MedWatch: www.fda.gov/medwatch/. Going forward, this will help the FDA – and us – to better understand the scope of the problem.
Epilepsy.com/Professionals Announcements from Joseph I. Sirven, MD, Editor-in-Chief
Don't forget to peruse other epilepsy.com offerings during the month of August. We have 2 Hallway Conversations scheduled this month. August 5, 2009, Dr. Larry Hirsch from Columbia University joins us to discuss the latest in ICU management of Status Epilepticus. On August 13, Dr. Scott Mintzer from Jefferson Medical College sits down with us to discuss the metabolic consequences of anti-seizure medications particularly on cholesterol. Please search through our announcements, updates and other offerings. We hope that you find the content useful for you and your patients.
Check out this month's featured online roundtable: Cognition Across the Lifespan: Antiepileptic Drugs, Epilepsy, or Both? with guests Dr. Bruce Hermann, Dr. Kimford Meador and Dr. William Gaillard, and hosted by Joyce Cramer, President, Epilepsy Therapy Project.
REMINDER: New Grant Opportunities – Letters of Intent Due August 3
New grant opportunities are being made available through the Epilepsy Research Foundation's New Therapy Grants Program. These will be awarded to scientific and clinical investigators pursuing innovative projects that demonstrate a clear path to commercialization. To view the request for proposals and to apply, please visit www.epilepsy.com/etp/grant_application.
Reviewed by Joseph I. Sirven, M.D., Editor-in-Chief
Submitted July 30, 2009
June, 2010 - Letting Go Joseph I. Sirven, M.D. |
As we look towards the month of June, we are faced with a number of very happy occasions that typically mark the beginning of summer and celebrate the connections to one another. At the end of May, we have Memorial Day, the first of the summer holidays, which is subsequently followed by Fathers Day in June and then culminating with the Fourth of July celebrations. As we consider summer, vacations and plans involving transportation to a favorite destination for a holiday, to visit friends and loved ones or some R&R are on peoples minds. For most individuals, this may involve an airplane flight to some far off destination. For others, it may simply involve getting into an automobile and seeing the best that America has to offer with regards to parks, cities and other inviting places. For others it simply means visiting family and friends. Regardless of the location, for many individuals with epilepsy, the privilege of driving takes center stage during summer.
As a father of a 16-year-old teenage boy, I am reminded on a daily basis of just how important driving is to an individual. My son has attended driving programs, done endless road simulations and all for the sake of being able to have a drivers license which will certify him to be safe behind the road. I, as any typical parent, am always distressed the moment that my son gets into the drivers seat. Not because I have major concerns about his safety, rather, driving signifies that our relationship has changed in a fundamental way. Driving represents independence and this privilege reminds me that he will soon not be dependent on me for the basic necessities in life.
The other day before I was to make afternoon rounds, my son successfully obtained his drivers license which he excitedly showed to my wife and I. That same day, my son drove off for the first time to a friends home. This was an outing that my wife and I had begrudgingly shared since the beginning of his school days and had come to cherish as those days became fewer and fewer. As he pulled away, my wife cried and we hugged, and I simply said sometimes we just have to let go.
As I went to work the next day, I was also faced with another 16-year-old, but in this case, it was quite a different circumstance. This was a teenager who had been seizing continuously for weeks after an anoxic event from a serious cardiac arrhythmia which ultimately led to a persistent vegetative state. In this situation, I found myself face-to-face with the parents of this child. They shared with me the same fears, the same hopes, and the same goals that I have for my own child, which is to keep them safe, to keep them close. However, in this case of ongoing seizures where all options had been exhausted, there was only one way of letting go.
These disparate situations connect on the most basic emotional level. As I think about the plight of the status epilepticus patient that I tended to the same week that my son drove, I find it hard to know when is the right moment to advise patients families that all therapies have been tried and that letting fate take its course may be the best approach. Such decisions are never taught in medical school. I do not pretend to be God, nor do I pretend to be someone who is all-knowing and can, with certainty, know the outcomes of any given case. However, I do know that in some instances based on experience and scientific evidence that allowing a loved one to die can be a reasonable and merciful option. End of life decisions are devastating for all concerned and are even more so when it involves ones child. So for now, we do our best as parents and physicians to reassure ourselves that our children and patients are safe whether at home or on the road. Therefore, I look forward to the summer holidays or any day for that matter which celebrates our connections to one another and hope that we can find the best way to improve quality of life, impart meaningful hope, and provide the best of care for all of our patients.
July, 2010 Joseph I. Sirven, M.D. |
As we enjoy the summer weather, we want to take a moment to show our appreciation for one of the true great things that is offered for children with epilepsy across the country- summer camp. The month of July hearkens back to our childhood for those of us lucky enough to have had an opportunity to go away for camp. Summer camp has been a rite-of-passage for many American children. Oftentimes, it is the first time that kids experience independence and separation from their families. For parents, camp offers breathing room for parents to recharge and rejuvenate their batteries without their children complaining about boredom and nothing to do. For many children with epilepsy, camp is an unattainable fantasy given that many parents are very reluctant to send their children off to a traditional summer camp and alternatively, many camps are reluctant to accept children with seizures.
This is where we have to give thanks for the number of epilepsy camps that are offered throughout the United States during the summer months which provides children with epilepsy with the summer camp experience. Here in Arizona, Camp Candlelight which is supported by the Epilepsy Foundation of Arizona, is one of the main highlights of the year for children and their families with epilepsy. For one week a year, children with epilepsy allow themselves to become like any other kid. This only occurs when surrounded by other children with seizures. In fact, the stigma, the separation, the social isolation that is often the case for many individuals who have seizures simply evaporates within the summer camp milieu. During this week, such activities as horseback riding, archery, swimming, hiking, or simply just being a kid is a fantasy realized for children with seizures. This week of activities allows these children the opportunity to make new friends, discover new talents, gain more self-confidence and independence while learning more about their epilepsy. We have to thank the physicians, the nurses, the volunteers and the numerous individuals that spend countless hours trying to make certain that everything is safe and that these individuals with seizures are just like any other kid. It is a small miracle where parents can let go for just a few days and entrust their children to professionals who can truly help and allow their children to have the same opportunities as children without seizures. So as the month of July and the summer months are upon us why dont you thank these individuals and join me in acknowledging these amazing health professionals and volunteers who are out there allowing this small group of people to have a day where they dont have to worry about what that day will bring.
Over the next month or so, epilepsy.com professionals will resume the hallway conversations programming for 2010. We took a hiatus over the month of June in order to recharge our batteries as well. We have four interviews that we think will be quite useful for you as we refocus our purposes to looking at novel treatments and interesting approaches to the management and diagnosis of epilepsy and seizures. Drs. Drazkowski and Hoerth from Mayo Clinic Arizona will present their research regarding autoimmune epilepsy, a type of seizure condition that is associated within the inflammatory process. They will help to highlight what we know and what can be done for this particular condition. Dr. Steven White from the University of Utah will join us in July to help discuss the anti-epileptic drug development program. This remarkable program sponsored by the National Institutes of Health by the U.S. government is a model of activity and hope for our future as new compounds are tested and tried for potential therapy for seizures. One never knows what blockbuster agent lurks from the thousands of compounds that are tried in his lab. Dr. White will join us to discuss this process and what future hopes that we can look forward to with regards to new seizure drugs. Dr. Jose Cavazos from the University of Texas at San Antonio will join us to discuss one of the more common causes of seizures but one that receives a little attention, neurocysticercosis. This type of epilepsy, which is caused by a parasitic infection of a tapeworm which is due to ingestion of uncooked pork, is a very common cause of seizures in the developing world. Dr. Cavazos joins us to discuss treatments, management, and diagnosis for this condition. Last, but not least, Dr. Dennis Dlugos from Childrens Hospital Philadelphia will join us to discuss the latest management in pediatric epilepsy. What do we do about epilepsy surgery in kids with epilepsy; and how do we proceed with treatment? Dr. Dlugos will help shed light on these items.
We hope, as usual, that you find all of this programming helpful and useful for your practices and if you have any suggestions or comments with regard to Hallway Conversations or any aspects Epilepsy.Com professionals, we certainly welcome them. We look forward to providing more materials for your use so you can provide the best quality care for individuals afflicted with seizures. For further information on upcoming Hallway Conversations, please go to epilepsy.com/professionals
August, 2010 Its a Small World After All Joseph I. Sirven, M.D. |
An ounce of prevention is worth a pound of cure
Benjamin Franklin
To all of our readers and visitors to Epilepsy.com Professionals, I wish you the best of August. At this point, many individuals are winding down vacations to locations far and near and oftentimes this involves international travel. One of the issues that arises with international travel to some areas is that it requires prophylactic care from endemic diseases , especially when visiting the developing world. On a recent trip that I undertook to such a country, I was surprised by the number of vaccinations and suggestions that were provided to me by my physician with regards to strategies on how to keep safe and healthy. This made me wonder what special issues and challenges those with epilepsy outside of western industrialized nations must consider. There is a significant difference between the causes of seizures and epilepsy outside the industrialized US and the so called third world. Interestingly, parasitic infections are the most common causes of seizures and epilepsy. In fact, the list of infections that may cause epilepsy is somewhat long. However, as our borders continue to become more porous and the world truly becomes a small global community, encountering epilepsy from such causes is more commonplace.
In this months Epilepsy Currents, Gretchen L. Birbeck outlines an excellent overview which is the first-part of a two-part article entitled, The Issues of Epilepsy Care in Developing Countries. The article is found in the July/August Epilepsy Currents, which can be easily accessed from the Epilepsy.com/Professionals homepage. I highly recommend you reading it. A common epilepsy related infection that I often encounter in my own practice from living in the southwest is neurocysticercosis. This scary sounding name arises from infection from the tapeworm, taenia solium. Taenia soliums primary host are pigs. Human exposure is by either eating undercooked pork with the tapeworm eggs, or more commonly, simply the lack of a good handwashing when handling food. The sad fact about these common causes of epilepsy is just how preventable they are. Indeed, quoting from Dr. Birbecks article in Epilepsy Care in Developing Countries, poor sanitation may be the single most important social factor underlying the increased prevalence of epilepsy in tropical and developing countries. Even now, Benjamin Frankins aphorsim on prevention is germane to modern times, An ounce of prevention is worth a pound of cure. With the rise of global air travel and immigration that occurs throughout the world, it is not a surprise to see an increased rise in epilepsy related to this condition even here in the US.
In order to help define the next step, we are devoting an Epilepsy.com Hallway Conversation to the topic. Jose Cavazos, M.D., Ph.D., from the University of Texas, San Antonio will join us later in the month ( August 17) to help discuss some of the issues associated with the diagnosis and treatment of this increasingly common cause of seizures in the United States. In addition, Dr. Stephen White from the University of Utah will also be joining us on Hallway Conversations (August 12) to discuss antiepileptic drug development. We hope that wherever your travels take you, that you have a safe and relaxing time during this last month of summer. We hope that find this material useful for your practice and for the betterment of your patients quality of life.
September, 2010 Epilepsy, Exercise and Sports Joseph I. Sirven, M.D. |
Its September and that means back to school. One of the classic rites of back to school passage is the return of fall sports, particularly those involving football, the winding down of the baseball season and other sports that take center stage. Along with the excitement that school sports bring, there can also be sidelining disappointments in individuals with epilepsy especially if well meaning administrators use seizures as a barrier to prohibit participation in these after school activities in the name of safety. Invariably, the question arises of how should individuals with epilepsy be counseled with regards to exercise and sports participation? Do the benefits of exercise outweigh the potential risk from participating in a given sport? Are there any activities that one must not allow individuals with seizures to partake? These questions are important and can fundamentally impact the quality of life for thousands of individuals.
On any given day there is a newspaper article, a magazine column or some press clipping telling us that we need to increase our exercise time due to the rampant obesity epidemic in the United States. Individuals with seizures and epilepsy are often caught in the middle of conflicting messages on the topic. On one hand, exercise is encouraged and on the other, certain outdoor activities are discouraged due to potential dangers. There is some good news to report. Studies have shown that exercise may possess antiepileptic properties. That is, exercise in its own right may be able to reduce seizures. Even if a seizure were to occur, the risk is reportedly highest during the cool-down period immediately post exercise and not during the activity. However, the few studies reviewing this topic have not given precise answers on the issue. Curiously, exercise is a common activity utilized in epilepsy monitoring centers to help encourage seizure recording, yet it actually may have the opposite effect if performed on a consistent basis. Clearly, this is a complex subject and more research is needed in order to understand it.
If one accepts that exercise is a helpful and necessary part of life then how individuals with seizures should be counseled about playing sports, which is a common way in which many people exercise. The risk of an injurious seizure during an activity is going to depend on the type of seizure. Generalized tonic-clonic or atonic seizures are more likely to cause a problem than a simple partial event. There are some hard and fast generalities that can help guide individuals with regards to participating in sports. Contact sports generally do not provoke more serious seizures; however, one has to be cautious about the potential for head injuries and concussions. Recently, concussions have received considerable media attention. A concussion in someone with epilepsy can potentially trigger more events. Therefore, taking the necessary safety precautions are essential to prevent problems. Special considerations also need to be made with regards to water based sports. It is never safe to assume that because a person has seizures means that they must be banned from participating in any type of competitive sports. Rather, common sense should rule the day.
In this months Hallway Conversations, we will explore the topic of sports, exercise and epilepsy. Dr. Nitin Sethi from the Weill Cornell Medical Center will join us to discuss this issue, what we know about the research and what should we as health professionals be counseling our patients with regards to this topic.
Later in the month of September, Dr. Carl Bazil from the Columbia Presbyterian Medical Center will be discussing potassium channel antagonists on a special Hallway Conversations pertaining to this new class of antiepileptic drugs. Over the summer, a new agent, Retigabine, was recently evaluated by an advisory panel which voted to recommend approval of this agent by the FDA. The final FDA ruling on this first of class drug has yet to be rendered. Dr. Bazil will help to illuminate how these drugs work, what seizure types they might control and what are their potential side-effects.
We hope that you find these topics helpful and useful. We also hope you join us on Hallway Conversations or throughout our various content platforms on Epilepsy.com.
October, 2010 - On my Mind: Whats Next? Joseph I. Sirven, M.D. |
To all those who do not know me, let me introduce myself as your new Editor-in-Chief of Epilepsy.com. My name is Joseph I. Sirven, M.D. and I recently took over the editorship from Dr. Robert Fisher who will still remain active on the site with various initiatives. I am a practicing epileptologist at Mayo Clinic in Arizona. As I survey the amazing amount of work that my predecessors have put into the content on Epilepsy.com, the question arises, what should you expect from my tenure for the next two years? Perhaps the best way to answer that question is to consider the current state of epilepsy care in 2010.
In 2008, the U.S. Centers for Disease Control and Prevention (CDC) published an important document entitled Epilepsy Surveillance among Adults---19 States, Behavioral Risk Factor Surveillance System, 2005. MMWR Surveillance Summary, August 8, 2008/57 (SSO6); 1-20. This analysis was based on results from a random-digit dial telephone survey of U.S. adults over the age of 18 conducted by the CDC. These adults did not necessarily have epilepsy, but were asked questions pertaining to epilepsy in at least 19 states. This random dial system is used to track what is ongoing in the United States for various disease conditions and this was one of the opportunities for epilepsy to register on those surveys so as to obtain a brief snapshot of what is happening in epilepsy care at that point in time.
The study found that about 1.65% of adults from 19 states reported that they had been told by a doctor that they had epilepsy or a seizure disorder. Among adults with active epilepsy who reported recent seizures, 16.1% reported not currently taking their epilepsy medications and 65.1% reported having had more than one seizure in the past month. Among adults with a history of epilepsy, 23.7% reported cost as a barrier to seeking care from a doctor within the past year. A total of 34.9% of adults with active epilepsy with seizures reported not having seen a neurologist or an epilepsy specialist in the previous year. Adults with epilepsy were more likely to be physically inactive, and more likely to smoke. All in all, despite the number of therapies available to Americans with epilepsy, a large proportion of people continue to suffer for a variety of reasons and it tells us that so much has left to be done in order to truly help those afflicted with this condition.
How can Epilepsy.com help?
The role of Epilepsy.coms parent foundation, the Epilepsy Therapy Project is to foster new innovative treatments and get those treatments to the U.S. marketplace sooner than later. Therefore, my role as I see it over the next two years is to further the vision of Epilepsy Therapy Project and help highlight those areas where new treatments may come to market sooner to help individuals. You will see a number of slow evolutionary changes that will occur over the course of the next two years that will help to achieve this mission. We want to help promote new effective therapies and we want to get these treatments to market. Yet we also want to identify those areas of epilepsy-related problems that are not being addressed by the therapeutic marketplace.
Therefore, I plan to implement the following changes:
Hopefully, by accomplishing all of these above you will find an indispensable web site, providing information to professionals, patients or anyone that is interested in this condition. We hope to roll out information in a number of various platforms, including apps and other electronic means by which people obtain their information.
From this, we hope that this will truly help inspire innovation, education and, research that will ultimately end the scourge afflicting 1.65% of the U.S. population. Please join me over the next several years as we hope to make all of this a reality.
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Happy 2009!
I am delighted to be serving in my new role as editor- in- Chief of the professional site of epilepsy.com and to build on the amazing work of my predecessor. As you may know, the previous editor-in-chief, Dr. Steven Schachter has moved on from this role as he takes over as President of the American Epilepsy Society. My vision for this site is to provide the most up-to-date and current overview of current events with regards to all aspects of epilepsy news and issues geared to the practitioner who cares for patients with epilepsy and to do this in tandem with the editor of the consumer site of epilepsy.com, Robert Fisher, MD, PhD.
Sadly, we start the year with a reminder of how cruel and deadly epilepsy can be. On January 3, 2009, John Travolta's teenage son, Jett, died from a Grand mal seizure in a bathtub in the Bahamas. Mr. Travolta had a history of seizures and had been taking depakote according to published accounts.
For more information, the reader is directed to the following websites.
Although there are no words of consolation for parents facing such a devastating loss, this tragedy helps to redouble our efforts as physicians and health care workers at finding better ways to prevent seizures and its consequences.
As we look to the upcoming year, hope remains as new therapies become available. Recently, two new anti-epileptic drugs, Rufinamide and Lacosamide were approved for use in the US. In addition, potential new stimulation devices are a step closer in becoming a reality for patients with seizures. Over the course of 2009, readers of epilepsy.com will notice several gradual changes. There will be an increased emphasis on podcasts from epilepsy thought leaders. Several new additions to the "Hallway Conversations" Series will debut. Guest columns on new drugs, devices and other hot topics will be forthcoming.
New on the website, take a look at the latest Keto News article authored by Christina Bergqvist, MD. She offers the Top 10 Scientific Articles on the Ketogenic Diet for 2008. This is a fascinating summary and will help us all understand how to employ the diet in the management of patients with seizures.
Announcing New Grant Opportunities – Proposals Due March 7
New grant opportunities are being made available through the Epilepsy Research Foundation's New Therapy Grants Program. These will be awarded to scientific and clinical investigators pursuing innovative projects that demonstrate a clear path to commercialization. To view the request for proposals and to apply, please visit www.epilepsy.com/etp/research_programs.
My goal for the professional site of epilepsy.com is to keep all practitioners updated. I am excited, as we move forward, to continue to publish interesting articles that will be helpful to those who are in practicing clinicians so as to preserve and better the lives of patients with epilepsy.
Joseph I. Sirven, MD
Epilepsy.com Board members and contributors cannot give medical advice by email. Only a doctor who has examined the patient and reviewed the medical records can comment on individual patient issues.
We welcome suggestions for additional types of material, but we do not have the capacity to respond to individual requests for information.
As we start the year with a new US President, we now know that one of Mr. Obamas main agenda items is healthcare reform. Thus, as we greet the month of February, a healthcare debate will begin in earnest on the many changes likely to occur in the coming months and years which may have a significant impact on the way in which healthcare is delivered. Regardless of whatever health system modifications are implemented, there will be an increased emphasis on quality and its measurement and how to deliver medical care at a lower cost.
In this months Epilepsy.com Professionals, we are highlighting tangible ways in which healthcare reform may impact the care of patients with epilepsy. Two of our hallway conversations this month directly pertain to this issue. On February 12, 2009, we will be talking to Dr. Jacqueline French over the increasing issue of generic antiepileptic medications. Second generation antiepileptic drugs are now reaching brand patent maturity. Therefore, an increased number of generic versions of these medications are beginning to flood the marketplace. Despite their low cost, questions arise as to whether there is sufficient efficacy data to show that generic versions are equivalent to the original brand name drugs. Given the substantial differences in price and questions of safety; we hope the interview helps clarify the issues.
On February 19, 2009, Hallway conversations will focus on the development of quality measure indicators for epilepsy. We will be talking to one of the Co-Chairs of the panel for the development of the epilepsy quality measures for the American Academy of Neurology, Dr. Nathan Fountain from the University of Virginia. There are eight proposed epilepsy measures pertaining to diagnosis, therapy, counseling and safety which if accepted by the Centers for Medicare of Medicaid services of the US Government, will lead to a requirement for formal documentation that minimum care standards were met at each and every physician/ patient encounter as outlined in these proposals. This issue is important and affects us all. Public comment from physicians, patients and anyone in the epilepsy community will soon open on these proposals in order to make certain that there is a fair and honest vetting before they are implemented. Please download and listen to this interview.
In addition, we will continue to bring you the latest information about new therapies and current events over the course of the month. On February 4, 2009, we will be talking to Dr. Gregory Krauss from Johns Hopkins University Medical Center about the recently approved drug, Rufinamide, which is now available in the United States. Lastly, Dr. Eric Kossoff in his Keto News article discusses whether ketosis is necessary for the ketogenic diet, a thought provoking topic.
Don't Forget New Grant Opportunities – Proposals Due March 7
New grant opportunities are being made available through the Epilepsy Research Foundation's New Therapy Grants Program. These will be awarded to scientific and clinical investigators pursuing innovative projects that demonstrate a clear path to commercialization. To view the request for proposals and to apply, please visit www.epilepsy.com/etp/research_programs.
We hope that you find all of this helpful in caring for patients with epilepsy and that in some way we contribute to improving quality of life for all patients afflicted with this condition.
Joseph I. Sirven, MD
Epilepsy.com Board members and contributors cannot give medical advice by email. Only a doctor who has examined the patient and reviewed the medical records can comment on individual patient issues.
We welcome suggestions for additional types of material, but we do not have the capacity to respond to individual requests for information.
In the nonfiction book entitled, "Mountains beyond Mountains," Tracy Kidder tells the amazing story of Dr. Paul Farmer the famed infectious disease specialist from Harvard Medical School and his work in caring for the poor of Haiti. In a memorable aphorism, Dr. Farmer states that "medicine is a social science and politics is nothing but medicine on a larger scale. Medical education does not exist to provide students with a way of making a living but to ensure the health of the community. Physicians are the natural attorneys of the sick and social problems should largely be solved by them." In the spirit of this message, during the month of March, epilepsy.com Professionals will focus on the concept of how the physician can best help our patients with psychosocial issues which are such a significant burden of disease. In four separate interviews on Hallway Conversations we explore the theme of how best to support our patients in dealing with the obstacles that epilepsy has placed in front of them.
Beginning on March 4, Dr. Blanca Vazquez from New York University School of Medicine discusses how we can best help our Spanish speaking patients with epilepsy. Encountering Spanish speaking patients is now commonplace. Yet there are cultural and language hurdles that must be overcome in order to provide good care. Physicians often ask, "What is the best way to deal with an ever increasing population of Spanish speaking individuals with chronic seizures? What are the do's and don't's?" Dr. Vazquez provides some answers.
Status epilepticus, one of the most feared of medical emergencies, is important to understand as a patient's life is at risk and knowing how we can best manage these cases is essential. Because patients in status epilepticus are often not conscious, they cannot participate in the decision making process. In essence, the physician becomes the ultimate patient advocate in this circumstance. On March 13, Dr. Brian Alldredge, PharmD, from the University of California San Francisco discusses the pros and cons of status epilepticus therapy and the latest clinical research on the topic.
On March 18, we start the first of two interviews pertaining to epilepsy and social issues. Dr. David Labiner from the University of Arizona in Tucson joins us to discuss the American with Disabilities Act and how to best inform our patients with regards to this law and its impact. Employment and social issues such as driving will be explored in this particular interview. The second interview on social issues coincides with the second annual Purple Day. Founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, people from around the globe are asked to wear purple and spread the word about epilepsy. For more information, please click the link www.purpleday.org. On this day, Dr. Brian Smith from Henry Ford Medical Center in Detroit, Michigan, joins us to discuss how we can best advise patients on medications, generic substitutions and available resources.
Don't Forget New Grant Opportunities – Proposals Due March 7
New grant opportunities are being made available through the Epilepsy Research Foundation's New Therapy Grants Program. These will be awarded to scientific and clinical investigators pursuing innovative projects that demonstrate a clear path to commercialization. To view the request for proposals and to apply, please visit www.epilepsy.com/etp/grant_application.
We hope that you find all of our content, our updates, and the four hallway conversations during the month of March are helpful to both you, your practice, and most importantly, to the patients that we ultimately serve.
Joseph I. Sirven, MD
Epilepsy.com Board members and contributors cannot give medical advice by email. Only a doctor who has examined the patient and reviewed the medical records can comment on individual patient issues.
We welcome suggestions for additional types of material, but we do not have the capacity to respond to individual requests for information.
January column from the Editor-in-Chief Joseph I. Sirven, M.D. |
Happy New Year! January is a time of reflection, hope and excitement for what is to come over the next twelve months. Here at Epilepsy.com Professionals we are engaged and very enthusiastic as to what the New Year promises to bring in our fight against seizures and epilepsy. As we start the New Year, this is a traditional time for new years resolutions. I was recently asked about my New Years resolution and I replied that I would resolve to better listen to my patients . Listening is an active process that involves taking into account body posture, facial cues, the voice and what is actually being said. I think for all physicians we find ourselves in a situation that sometimes as the clinic day grows busier and the time allowed for our patient visits grows shorter, it gets more difficult to conduct active listening and truly understand what the person in front of us is telling us.
As I resolve to keep this resolution of better listening to our patients I am reminded that there are so many issues that really have risen to the forefront as 2010 dawns that we really need to pay close attention to. As was recently noted immediately prior to the Christmas holidays, the Senate passed a historic healthcare reform bill. Many details are written in this thousand page tome yet little is truly understood of how it will impact those patients who suffer from epilepsy and seizures. My only hope and prayer is that as we see what is passed in healthcare reform that the act of being able to sit, talk and listen to your patients is optimized and not hurt by whatever is changed in healthcare reform.
As we look to the future on epilepsy.com, much is happening over the course of the winter of 2010 that will help you as a professional care for your patients with epilepsy. As you will note, we have, in collaboration with the American Epilepsy Society, hosted a convenient link to Epilepsy Currents, the American Epilepsy Societys journal. Epilepsy Currents provides an up to date review of the latest basic science and clinical epilepsy research. We hope that its placement on the Epilepsy.com Professionals page will serve as an excellent access point to those who want to see what the latest in research is. In addition, our Hallway Conversations continue over the course of January. On January 13 Dr. Lisa Bateman from the University of California Davis in Sacramento, California, discusses her groundbreaking research on how to prevent diminished oxygen intake or hypoxemia during seizures especially in a monitoring unit admission. On January 27, 2010 Dr. John Stern from the University of California, Los Angeles, joins us to discuss his work on how to improve patient-physician communications, the outcome of a Phase 2 study regarding antiepileptic drugs and their mood-adverse effects.
Lastly, there are many other items on Epilepsy.com that we hope you will find interesting and enjoyable. My Epilepsy Diary is gaining traction and popularity as a new tool to help professionals as well as their patients track their seizures and response to medications. We also have an upcoming CME course in San Francisco in late February furthering the latest information on epilepsy therapies that display promise. We hope you find this information helpful so that you may better improve the quality of life of your patients.
Joseph Sirven, M.D.
A personal invitation for you to attend the 2010 Pipeline CNS Conference Joyce Cramer |
The 2010 Epilepsy Pipeline Update Conference continues the tradition of showcasing new and promising treatments. This day will focus on preclinical, early- and late-stage clinical development strategies, and investment and business development opportunities. See http://www.epilepsy.com/etp/pipeline2010.
Why Attend the Epilepsy Pipeline Conference?
This in-depth, 2 day meeting showcases emerging companies and scientific entrepreneurs alongside established companies presenting their strategies, candidates and development programs. New anti-epilepsy products, in particular, are known to provide the optimal pathway for CNS therapeutic development with well-characterized mechanisms, therapeutic approaches, functional models and well-defined clinical endpoints for regulatory studies.
Thoughtfully selected by Epilepsy Therapy Projects expert Scientific and Business Advisory Boards, presenters will cover the most innovative and intriguing therapeutic targets and programs in development today for epilepsy - with potential for broader CNS applications. Hear insights from scientific, clinical and industry leaders relevant to investment in epilepsy and broader CNS areas. Recent advances, creating remarkable investment and commercial opportunities, require expert perspective on risk profile, clinical advantages and product lifecycle management.
We hope you will join us for this enriched 2 day opportunity:
More details are available on the epilepsy.com website. Please be sure to register and join us.
May, 2010 - Summary of Epilepsy Research Highlights at the 2010 American Academy of Neurology Meeting in Toronto, Canada Joseph I. Sirven, M.D. |
To all of our Epilepsy.com readers and listeners, it is now a new month and new updated information is currently available on Epilepsy.com for which we are very excited to share with you. Over the past few weeks, the American Academy of Neurology convened its annual meeting in Toronto, Ontario, Canada, where 200 epilepsy-based abstracts were presented and discussed on the latest research from investigators from around the world. I am happy to report on some of the highlights from this meeting which you may find useful to your practice. Here I report on 8 different presentations that struck a cord in me primarily because they represented various areas of active investigation or concerns and are representative of the latest information available on these topics.
Given that a new health care law has been signed in the US, any issue that pertains to quality care or the costs of delivering care is quite germane to the current ongoing topic of health care in the United States. In one study by Forlenza and colleagues, they assessed the market scan database of Medicaid claims from 7 states pertaining to 13,355 individuals. They assessed whether maintaining a given drug regimen or changing it (either discontinuing or adding an antiepileptic drug to a drug regimen) impacts the cost of delivering care. They found that increased visits and increased services were noted for individuals where they did not follow the course of care, particularly those who were either discontinued or added an antiepileptic drug to their care. This is important information as we strive to understand variables that drive health care costs and value in determining the best health care delivery model for individuals with epilepsy.
In a second study, which addresses the topic of generic agents, Krauss et. al addressed the issue of bioequivalency which are at the center of the debate for approval of generic formulations of antiepileptic drugs. In his analysis, he conducted a meta-analysis of bioequivalence studies for 147 generic antiepileptic drug formulations incorporating 258 reports. The authors concluded that most bioequivalency studies involve only healthy adults, which is quite different from the population for which these drugs will be utilized for, which are individuals with epilepsy. In addition, he noted that there was minor variation between brand and generic antiepileptic drugs, but there was greater variability among particular antiepileptic drugs, especially those with low solubility. For instance, oxcarbazepine had a variation of 33% between generic and brand drug with regards to specific pharmacokinetic parameters. In general, the study helped to again frame the issue that much more work is needed in order to understand the impact of a generic drug and its introduction into the market as compared to a brand agent.
Two presentations could potentially change the practice of epilepsy as it pertains to therapeutic drug levels and assessing whether a drug can be instituted before initiating it in a given group of patients. For instance, in a study by Rajappa and colleagues, they studied the HLA-B1502 genetic marker for carbamazepine-induced Stevens-Johnson syndrome. Their study confirmed earlier reports that the presence of this pharmacogenomic marker predicts carbamazepine-induced Stevens-Johnson syndrome. Moreover, the authors concluded that any Southeast Asian individual for which carbamazepine is initiated; this test should be done due to its consistent association with this serious condition. This testing recommendation is new and would reflect a change in standards of practice.
In an unrelated study, Dr. Leppik and colleagues looked at intra-individual variability of carbamazepine and valproic acid concentrations in elderly nursing home residents. A significant intra-individual variability of carbamazepine and valproic acid was noted such that valproic acid levels can vary up to 460% and carbamazepine 240% within a given individual over the course of the day. The salient point of this investigation are that single measurements may not be enough to determine whether a dose change is necessary given that these levels are so variable. Dosing decisions should not be based on a sole measurement as is often the case in clinical practice.
A topic that we have discussed often on Epilepsy.com is that of the new FDA suicide warning for all antiepileptic drugs. This was the subject of a recent JAMA manuscript reaffirming the link between suicide risk and antiepileptic drugs. One particular presentation helped to address this issue, but in a practical manner. In a study by Kanner and colleagues, they assessed rapid screening for anxiety and major depressive disorders and its link to suicide risk in an outpatient neurology clinic with individuals with epilepsy. Of 765 patients evaluated, they utilized 3 instruments which helped to gauge the level of suicide risk. These instruments may be quite useful for clinicians to hone in on suicide potential and will help to identify which individuals are of concern. In sum, although the black box warning is quite a frightening thing for patients, at the end it is likely that the warning will help to galvanize physicians to be more proactive in depression and suicide screens than perhaps they had been in the past.
A frequent topic on hallway conversations is antiepileptic drug teratogenicity and the impact of these therapies on newborn infants. Two particular studies help to provide more information on this topic. In a followup analysis of the NEAD Study, Drs. Meador et al showed an analysis of 199 children of women with epilepsy who had been treated with carbamazepine, lamotrigine, phenytoin or valproic acid. These individuals were followed and assessed with IQ by age 3. They then stratified those who had been breast fed versus those who had not and looked for differences in neurodevelopmental outcome based on IQ. There was no evidence of adverse effects of breast feeding during antiepileptic drug therapy and cognitive outcomes were not different between these groups. The authors continue to caution that larger numbers of patients need to be studied before any conclusions can be drawn.
In a related topic, Isojarvi and colleagues evaluated lacosamide, which was recently released and introduced to the U.S. market, and looked at 49 clinical trials for pregnancy outcomes. Of the 10 pregnancies that they identified, there was no evidence of major congenital malformations. Although this is promising information for lacosamide, we still do not know the full reality of what may or may not be the safety risk with this particular agent or other recently released antiepileptic drugs until larger populations of pregnant women are evaluated. The study serves as a reminder that all physicians should encourage their pregnant patients to join a pregnancy registry.
Recently, the FDA Advisory Panel approved the introduction of deep brain stimulation for the management of refractory epilepsy. Another device presented a subset analysis for efficacy for refractory partial epilepsy at the meeting. In the study presented by Salanova and investigators, they assessed individuals who had refractory mesial temporal lobe epilepsy implanted with an RNS ( responsive neurostimulation) for seizure improvement in the randomized double blind trial of the device. The investigators reported a 37% seizure reduction as compared to placebo. This is important because this is another medical device that is potentially approvable by the FDA and it is important to understand its effectiveness and when that efficacy is likely to be seen.
We hope that you find this brief report of only a handful of 200 abstracts presented useful to you and your patients. For further information, I refer you to the American Academy of Neurology web site and look under the epilepsy abstracts in conducting any searches of materials presented at this years meeting. In addition to this report, we continue with our hallway conversations in the month of May. Two of these hallway conversations directly pertain to some of the information that I have presented in this brief summary. On May 5, 2010, Dr. Andrew Herzog from Beth Israel Deaconess in Boston, Massachusetts, discusses the new birth control registry database which has just recently opened. This is a fascinating topic and will help to answer some questions with regards to women of child bearing potential and epilepsy-related treatments.
On May 17, 2010, we choose to go to a whole different spectrum of the population and Dr. Ilo Leppik joins us to discuss seizures in the institutionalized older adult patient. Dr. Leppik is a past President of the American Epilepsy Society and is an international expert on this topic. He will sit down and talk about the uses of antiepileptic drugs in the older adult in addition to some of the research that he recently presented with regards to the dramatic variability that is observed in the older adult when it comes to serum therapeutic levels. Lastly, the Pediatric subcommittee of the American Epilepsy Society Nonepileptic spells (NES) taskforce presents a brief monograph on NES across the lifespan that I am certain you will find helpful.
We hope that you find this and all of the material that is located on Epilepsy.com useful for both you and your patients. We hope you enjoy the month of May and you join us for upcoming hallway conversations and other epilepsy. Com activities.
Joseph Sirven, M.D.
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