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Epigraph Volume 12 Issue 3, Summer 2010

From The Information Officer

Improving Epilepsy Care

 

One of the primary goals of the ILAE is improving care of patients with epilepsy around the world. What improved care actually means and how it will be accomplished will depend on where in the world we are talking about, as the needs vary considerably. It is clear, however, that in much of the world even the most basic resources are limited or entirely missing. This lack of resources has arisen for many reasons. At one level epilepsy is not considered a pressing problem in relation to other medical issues within the medical community, or epilepsy carries such a social stigma that those who suffer from the disorder and their families do everything possible to deny the existence of the seizures. One can’t treat a disorder that, in the minds of many, doesn’t exist or doesn’t matter. As Nico Moshé points out in his note in this issue, part of the problem may arise because we have been creating a positive picture of epilepsy so that this terrible stigma can be removed. In doing so we may have lessened the urgency of uncontrolled seizures, which has, as a consequence, reduced the resources that are available to care for patients with this often devastating condition.

The problem of adequate care is further exacerbated by the lack of effective therapies in many parts of the world. This absence of treatments comes from a number of sources, not the least of which is socioeconomic: many countries and their citizens are unable to pay for the simplest treatments or to sustain those treatments over the many years that someone may live with epilepsy. Another reason behind the inadequate treatment is that there are no professionals (physicians or nurses) who have appropriate training or background in epilepsy. As a result the basic diagnostic and treatment infrastructure doesn’t exist, or the majority of patients with epilepsy don’t have access to it. Yet our goal is to overcome these obstacles to ensure that everyone who needs epilepsy treatment gets it. Looking at the problem from a distance, it seems almost insurmountable. In this issue of Epigraph as well as in several past issues, we have presented several different approaches that have been successful or show great promise for improving access.

The issue of developing the expertise in a sustainable manner is addressed by Marco Medina, 3rd Vice President of the ILAE and Dean of Medicine at the National Autonomous University in Honduras. In his article he describes the problem of a limited number of neurologists in Honduras and how the problem was solved in a way that ensures long-term access to specialty care from specialists who have the expertise to address the issues that are specific to the country. Another means for improving care is providing support to colleagues in countries in which there may be only a handful of professionals who have a significant interest in epilepsy. In such situations it is easy for the specialist to feel isolated and to become discouraged. In his article, Lionel Carmant, of the North American Commission, describes the efforts on the Caribbean island of Hispaniola, including the Dominican Republic and Haiti, to establish and maintain specialized clinics. The situations in the two countries are very different, but the effort is the result of local interest that is encouraged by individuals and organizations. In the cases of Honduras and Hispaniola, the success was driven by the local recognition that there was a problem. The problem was solved in a locally appropriate manner, with some encouragement and suggestions from outside advisory groups. This approach may be a useful model for other countries to follow (and we have written about such successful local-distant partnerships in previous issues). The local initiative is the key to long-term sustainability of the enterprise.

In many countries, however, that kernel of enthusiasm doesn’t exist or professionals with interest in epilepsy don’t know where to turn. The ILAE and its Regional Commissions have been working to overcome this barrier. A recent example is described in the article by past ILAE President, Giuliano Avanzini, in which he describes a recent workshop in Ghana that was co-sponsored by the ILAE and the International Brain Research Organization (IBRO). The course was designed to introduce many key concepts regarding clinical epilepsy and the basic science underlying the disorder. Courses like this one and many others that have been developed by the educational arms of the Asian, Latin American and European Regions are often the critical first steps in developing better epilepsy care. Although courses such as these are in and of themselves not really sufficient for developing local expertise, the courses are often critical for showing that there are better treatments and that scientific research is helping to make real progress. These programs also help to identify and encourage local professionals to develop further skills in epilepsy. These courses also allow young healthcare workers to make outside connections that may serve as resources. The courses can also identify promising and committed young talent that might benefit from further training. 

In many ways these articles provide an outline of how the League might help to develop programs of improved epilepsy care in countries that at the moment don’t have local epilepsy expertise. The actual approach could vary depending on the specific conditions in a country, but the key aspects would include creating enthusiasm for the field and identifying interested individuals. The next step could involve more intensive training or interaction with mentors as has happened in a number of regions. The ultimate success though will come through the initiative of the local medical community. Although partnering with established programs is extremely important, as Marco Medina indicated, what ensures success is the local desire to be successful as well as conditions that are supportive of the goals. As we look to our goal of improving epilepsy care, we should keep these factors in mind.

Edward H Bertram
Information Officer  

President's Message

Solomon (Nico) L Moshé

 

It is nearly a year since I became your President. Through the coordinated efforts of the Executive Committee (EC) and the Commissions as well the support of all the Chapters we have accomplished many wonderful things, and once again it is important to thank you all for your hard and relentless work to improve the care of people afflicted by epilepsy.

During the last several months the League’s main effort has been the development of a new message. This message will allow us to increase our reach to all people with epilepsy in terms of access to care, education of professionals and people with epilepsy. It will also help with our efforts to augment training in both resource intensive and in resource poor underdeveloped countries. Ed Bertram, our Information Officer, the Global Campaign Task Force and several members of the EC have been working on this message. Many discussions have addressed the fact that epilepsy can be a potentially devastating disorder that can kill. We also want to include that while we have a few treatment options available, in the future we should strive to find a cure or even prevent the development of epilepsy. Although this message will attract attention, I should point out that it is contradictory to the previous slogan “Living well with epilepsy,” That slogan was chosen to help some people with epilepsy better cope with the condition, and to avoid the discrimination and stigma that usually accompanies the diagnosis of epilepsy. However, it did not bring the attention of the general public, governments and funding agencies to the plight of people with epilepsy, many of whom suffer from ongoing seizures and associated comorbidities including SUDEP. Therefore, the development of the new message is of paramount importance. Suggestions from all of you are welcome, especially on how to transition from the previous slogan.

We are also working to develop the far-reaching goal of improving the care of people with epilepsy worldwide, taking into account local obstacles. We are carefully assessing opportunities to further advance our mission. Through our collaboration with the WHO, Autism Speaks, Project Hope and other organizations we have identified regions where we may provide a comprehensive assessment of needs and deliver services at all levels, from the individual to the community to the general society in terms of access to care and education of all people involved.  For this purpose, we are actively pursuing projects to raise funds. In this issue of Epigraph you will note our progress thus far in our collaboration with IBRO as described by Giuliano Avanzini.  However, to achieve our goals we need to have many more people participate in our activities, and with this letter I would like to invite all of you to volunteer your time in our League’s activities and specify the area in which you are particularly interested. The current ILAE’s leadership is very keen about developing the future leaders of our organization.

I am confident that given your dedication, innovation and enthusiasm we will succeed in reaching our goals. Once again, I would like to thank you for the long hours you have devoted to our League’s mission, and I am looking forward to meeting with you at our Regional Congresses in the next few months.

Solomon (Nico) L Moshé
President

Message from the Treasurer

Emilio Perucca

 

In the last issue of Epigraph, I provided an overview of the status of the League’s finances, and of the various actions that the Executive Committee has taken not only to ensure the long-term financial viability of our organization, but also to support the many activities which the League is conducting throughout the world in agreement with its Strategic Plan. 

A very important role is played by the Regional and Topic-oriented Commissions, and I thank all Chairs and members of Commissions and Task Forces for putting together a great work plan for the present term. Many excellent initiatives have been proposed, and to prioritize them for funding, the Executive Committee has set up a Budget Review Committee composed of Michel Baulac (Chair), Alicia Bogacz, Lim Shih Hui, Judit Jerney, Gary Mathern, Cigdem Ozkara, Cristoph Pachlatko, and John Swann. This group is charged with the challenging task of assessing the value of each project in terms of its relative contribution to the Strategic Plan and adequacy of the requested budget. All Committee members, whom I publicly thank, have done a superb job, and their recommendations have been invaluable in allowing the Treasurer to assemble a comprehensive budget which was approved officially by the Executive Committee on 26 March 2010. Overall, we will be supporting the work of the League’s commissions with a total allocation in excess of U.S. $1.1 million for 2010 alone. All Chairs have been provided with a detailed scheme of each budget item allocated to them, and I am pleased to report that many projects are already in the implementation phase. 

A major component of the budget will go toward supporting educational activities both at a regional and a global level. To date, over U.S. $400,000 have been specifically earmarked for educational activities in fiscal year 2010, including courses and training programs. More funds are being allocated to support and expand the distance education program, under the leadership of C T Tan, Chair of the Commission on Education and Walter van Emde Boas, Chair of the Task Force for Distance Education. An additional U.S. $50,000 has been budgeted for activities leading to the creation of an African Commission, which will be charged with organizing a major Pan African educational event at the beginning of 2011. 

Finally, close links have also been established with a number of medical associations, humanitarian organizations and governmental agencies in various parts of the world, with the aim of developing partnership projects in areas of common interest. Some of these projects will include fund raising initiatives, particularly for programs aimed at improving education and epilepsy care in emerging countries.

Emilio Perucca
Treasurer

Photo Contest for IBE 50th Anniversary - Epilepsy Without Words

 

 

IBE launches a special photography competition as part of its Golden Jubilee celebrations.

A photography competition, open to all, is the first of many initiatives being planned to celebrate IBE’s Golden Jubilee in 2011. The competition, titled Epilepsy Without Words is open for entries from 15 May 2010 until the closing date on 1 March 2011.

A special photo gallery, displaying all entries received, will be open on the IBE website www.ibe-epilepsy.org starting 1 June 2011 and the competition winners will be announced during the 29th International Epilepsy Congress in Rome in late August 2011.

Categories

In addition to a category for regular digital camera photos, there is also a special category for photos taken using a mobile/cell phone. As most of us now carry a phone with an built-in camera, there is no excuse for not taking part in this competition. And, who knows, you could be the winner of one of the major prizes!

Who can enter?

The competition is open to everyone – professional and amateur photographers alike. However, if you are under the age of 16 years, you will need the permission of a parent or guardian to take part.

Prizes

Digital Camera Category:

  • 1st Prize: US$3,000
  • 2nd Prize: US$2,000
  • 3rd Prize: US$1,000

Mobile/Cell Phone Category:

  • 1st Prize: US$500
  • 2nd Prize: US$300
  • 3rd Prize: US$200

Downloads

  • Click here to download an entry form
  • Click here to download the competition brochure, which includes the competition rules
  • Click here for FAQs (frequently asked questions) about the competition
European Epilepsy Day

The International Bureau for Epilepsy is pleased to announce the launch of European Epilepsy Day. This important event is being created with the support of the International League Against Epilepsy and will be organized through EUCARE (a joint initiative of IBE and ILAE) and the IBE European Regional Committee.

European Epilepsy Day will take place annually on the 2nd Monday of February beginning in 2011. Together with the ILAE/IBE/WHO Global Campaign Against Epilepsy “Out of the Shadows”, European Epilepsy Day will strengthen the aims and objectives of IBE to improve the lives of those with epilepsy.

For more information, go to http://www.ibe-epilepsy.org/downloads/President's%20Letter%20April10.pdf.

Report On The Aftermath of the January 12th Earthquake On The North American Commission Hispaniola Project

Lionel Carmant

Since June 2008, the North American Commission through the Hispaniola Project made significant progress toward improving care of the population living with epilepsy on the Island of Hispaniola shared by Haiti and the Dominican Republic. Our projects included the opening of the first epilepsy clinic in Haiti, the opening of an epilepsy surgery center in Santo Domingo and an assessment of the prevalence of epilepsy and neurocysticercosis in the population living in rural areas of the Dominican Republic. This was halted by the natural disaster that occurred on 12 January, but we are happy to report that our projects are progressing and have made a significant difference in the region.

Although located within five minutes of the Presidential palace, the epilepsy clinic (CLIDEP, Clinique d’Épilepsie de Port-au-Prince) remained standing after the earthquake. The International League Against Epilepsy through its North American Commission has provided financial support for its repair and through a generous contribution from Astro-Med Inc provided the clinic with a portable EEG machine to perform EEGs in hospitals and rural areas. We also provided long-term support needed to maintain clinical services that have been overwhelmed by the number of head injuries, poor access to medication and extremely stressful living conditions. It is estimated that in the Port-au-Prince area there has been more than 6,000 people assessed for acute neurological problems by the international medical teams, including neurologists and neurosurgeons from Santo Domingo who helped train the epilepsy nurse and EEG technologist and who were involved in the neurocysticercosis project. For instance, CLIDEP, which re-opened 25 January welcomed more than 1,000 patients in the first month it re-opened, which is more than the number of patients seen in its first 12 months of operation.

Accompanied by an EEG technologist, David Hebert, I was able to visit the clinic in March 2010 to help set-up the portable EEG system and to bring more than $150,000 of medication donated to the Commission by Novartis Canada, UCB Canada and Apotec Canada. This will have a significant impact in preventing neurological damage and potential risk of death from break-through seizures that might occur when patients lose or use up all of their anticonvulsant medication.

According to local neurosurgeon Alix Elie, MD, director of the Port-au-Prince Epilepsy Clinic, he and his staff will continue to provide epilepsy care using the clinic site and the playground of a neighboring school.

Dr Elie also reports that the destruction of local pharmacies has created an urgent need for epilepsy medications. “Even if the drugs were available,” he says, “epilepsy patients in Haiti, for whom medications are an economic hardship to begin with, are now even less able to afford them.” Contributions from the professional epilepsy organizations and their members will go toward the purchase of medications for distribution by the clinic.

 

 

Photo:  A newborn with neonatal seizures undergoing EEG evaluation in
a tent housing the neonatal care unit at the University Hospital. 
The hospital’s pediatric pavilion was destroyed by the earthquake. 
Ten babies were being treated in the tent when this photo was taken.

We need to continue to support this special campaign to assist CLIDEP as there are now more organizations pulling out or at least reducing their presence in Haiti. Volunteer organizations have used CLIDEP to perform neurological assessments of the patients they evaluated and this has tremendously increased local demand among a population that cannot afford health care. Haiti needs projects like CLIDEP that are sustainable by local personnel but this requires significant knowledge transfer and financial support. To do so, the North American Commission has established a very successful visiting professorship program and intends to follow this up by providing teleconferencing support to the centers involved.

There are still many unmet needs for epilepsy care in Haiti. CT scans are performed only in a private clinic and is only available at a cost. The nearest MRI is in the Dominican Republic. Thus epilepsy surgery cannot be done in country. However, Diones Rivera, neurosurgeon and leader of the Epilepsy Surgery project in Hispaniola, has agreed to provide surgical care to Haitian patients that require such intervention through the Dominican public system.

In the Dominican Republic, the Dominican Epilepsy Club, local chapter of the International League against the Epilepsy headed by Dr Diogenes Santos-Viloria has made significant progress as well with the help of Dr Diones Rivera Mejía.

Through the financial support of the North American Commission, thirty-nine patients with epilepsy have been screened for the presence of Neurocysticercosis, as a cause of their epilepsy in four provinces of the South Region of the Dominican Republic, adjacent to Haiti, a region considered endemic. Patients have been transferred to Santo Domingo to obtain brain imaging and blood tests as well as when necessary appropriate treatment for their seizures. The investigation, which was halted following the earthquake, detected ten patients out of the first 39 tested, with calcifications on Computed Axial Tomography. Up to now, 75 patients have been tested. We want to reach 100 patients this year to confirm the trend and then establish a protocol to improve epilepsy care to this population. Dr Garcia from Peru and Dr Burneo from Canada have agreed to collaborate with us to develop this next phase of the project to better understand local risk factors and try to eradicate neurocysticercosis from the region.

The creation of the Center of Epilepsy Surgery in the Dominican Republic aims to provide optimal surgical care for the patients with refractory epilepsy with the help of Cedimat (Center of Diagnosis and Medical Imaging), which was founded by Professor Taveras, former head of Radiology at Harvard Medical School. With Cedimat, patients will be able to obtain a 3T MRI, functional imaging and magnetoencephalography as part of their investigation. To provide these services to the population, Drs Santos Viloria and Rivera, with the support of the North American Commission of the ILAE, have contacted the National Insurance of Health of the Dominican Republic (SENASA) to help them realize the importance of these procedures for patients and the long-term socio-economic benefits of such a program for the local Public Healthcare System. A state of the art video-monitoring room is also available. This is the product of more than ten years of work of the members of the Dominican Epilepsy Chapter who has supported Dr Rivera’s efforts to obtain additional expertise with a fellowship at the Epilepsiezentrum in NeuroZentrum, Freiburg, Germany followed by visits in Mexico with Dr Federico Velazco, in Colombia with Prof Jaime Fandiño, and in Canada with Drs Claude Mercier and Lionel Carmant. In addition, the group has recruited two neuropsychologists, Heidi Guerra, who trained in Barcelona and Evelyn Santos who also trained with Prof. Jaime Fandiño’s team in Colombia. The group has performed their first two EEG confirmed surgeries in patients with lesional epilepsies and is looking to expand the program with patients with temporal lobe epilepsy.

In conclusion, despite a difficult start to 2010, the Hispaniola project is continuing to progress and we expect all three phases of the project to be completed by the end of the year.

Lionel Carmant, Project Leader, North American Commission
Alix Elie, CLIDEP Director
Diogenes Santos-Viloria, Dominican League Against Epilepsy President
Diones Rivera, Dominican Epilepsy Surgery Group

New European Regulations for Driving and Epilepsy Come Into Force in August 2010

Mike Glynn, President IBE

 

With the imminent accession of a large number of Central and Eastern European countries into the European Union (EU), the European Commission of the EU set up three working groups to review driving regulations in 2003. The specific groups were for Diabetes, Epilepsy and Eyesight.  It is understood that there were concerns that many of the accession countries had no driving regulations for these conditions or operated blanket bans. In both these circumstances many people with the conditions drive because of the perceived unfairness of this. EU officials undoubtedly had visions of many Heavy Goods Vehicle (HGV) drivers who might be unfit to drive, undertaking huge journeys across the European land mass.   

The epilepsy and driving working group was headed up by Dr Eric Schmedding, a Belgian Neurologist with particular expertise in this area.  The other members of the group were also epileptologists drawn from all over Europe many of whom had been members of the earlier Driving and Epilepsy Workshops held in the late nineties in Brussels led by the late Dr Arthur Sonnen.  

The Schmedding group brought in its final report with proposals to unify driving and epilepsy regulations across Europe in less than two years. It has taken more than five years for the proposals to be accepted by the EU but it is hoped that by the end of August 2010 the new regulations will be in place in all member states. 

The EU European Directive 209 / 112 EC came into law on 29 August 2009.This Directive puts into force the recommendations on Epilepsy and Driving of the expert working group led by Dr Eric Schmedding which reported to the European Commission in 2005. European Union member states have up to one year to introduce new legislation or amend existing driving regulations in line with the Directive. In other words, EU member states must comply with this Directive by 29 August 2010.

Different rules apply for many other situations such as seizures in sleep, loss of consciousness, provoked seizures etc. but only the main points of the regulations are listed below \for full details please go to the IBE Driving Task Force pages at: http://www.ibe-epilepsy.org/activities/amending-directive-2006126ec-on-driving-licenses

The Directive defines Epilepsy as follows:

Epilepsy is defined as having had two or more epileptic seizures less than five years apart. A provoked epileptic seizure is defined as a seizure which has a recognizable causative factor that is avoidable;

and refers to  First Seizures in this way:

an initial or isolated seizure or loss of consciousness should be advised not to drive. A specialist report is required, stating the period of driving prohibition and the requested follow-up.

It is extremely important that the person's specific epilepsy syndrome and seizure type are identified so that a proper evaluation of the person’s driving safety can be undertaken (including the risk of further seizures) and the appropriate therapy instituted. This should be done by a neurologist.

Group 1 Rules (cars, vans, motorcycles, etc):

Drivers assessed under group 1 with epilepsy should be under license review until they have been seizure-free for at least five years.

If the person has epilepsy, the criteria for an unconditional license are not met. Notification should be given to the Licensing Authority.

Epilepsy: Drivers or applicants can be declared fit to drive after a one-year period free of further seizures.

First or single unprovoked seizure: the applicant who has had a first unprovoked epileptic seizure can be declared able to drive after a period of six months without seizures, if there has been an appropriate medical assessment. National authorities may allow drivers with recognized good prognostic indicators to drive sooner.

Group 2 Rules (Buses, Trucks, HGVs, etc):

The applicant should be without antiepileptic medication for the required period of seizure freedom. An appropriate medical follow-up has been done. On extensive neurological investigation, no relevant cerebral pathology was established and there is no epileptiform activity on the electroencephalogram (EEG). An EEG and an appropriate neurological assessment should be performed after the acute episode.

Epilepsy: Ten years freedom from further seizures shall have been achieved without the aid of antiepileptic drugs. National authorities may allow drivers with recognized good prognostic indicators to drive sooner. This also applies in case of “juvenile epilepsy”.

First or single unprovoked seizure: The applicant who has had a first unprovoked epileptic seizure can be declared able to drive once five years' freedom from further seizures has been achieved without the aid of antiepileptic drugs, if there has been an appropriate neurological assessment. National authorities may allow drivers with recognized good prognostic indicators to drive sooner.

Mike Glynn
President, IBE

 

Epilepsy and Neurology Develop Stronger Ties at the 51st Annual Meeting of the Japanese Society of Neurology

Sunao Kaneko
President, Japan Epilepsy Society and
Member, Commission of Asian and Oceanian Affairs

 

The 51st Annual Meeting of the Japanese Society of Neurology (JNS) (chaired by Professor Syoji Tsuji) with the theme “Breakthrough to the Next Stage” was held from 19 - 22 May 2010 at the Tokyo International Forum. This Society can be traced back to the Japanese Neurology Society which was inaugurated in 1902 (later renamed Japanese Society of Psychiatry and Neurology). In 1960, the neurology discipline independently established a society named the Japanese Society of Neurology, and epilepsy, a condition that was treated more commonly by psychiatrists at the time, did not have a significant role in the new JNS. Epilepsy remained for the most part outside of mainstream Japanese neurology for a number of decades, but more recently the JNS has placed greater emphasis on the neurological nature of epilepsy and has developed a closer working relationship with the Japan Epilepsy Society (JES). This developing relationship between the two societies resulted in the inclusion of epilepsy as a significant part of the program at the JNS Annual Meeting for the first time in anyone’s memory.  

As part of the opening ceremony on 19 May, Professor Emeritus Tatsuya Tanaka, First Vice President of International League Against Epilepsy (ILAE), delivered a congratulatory message concerning the new collaboration from ILAE President Nico Moshé. Guests representing other related international societies: Professor Emeritus Hiroshi Shibasaki (President, International Federation of Clinical Neurophysiology), Dr Chuanzhen Lu (Former President, Chinese Neurological Society) and Professor Juhan Kim (President, Korean Neurological Association) also extended their congratulations. Professor Byung-In Lee, who is Chairman of the Commission of Asian Oceanian Affairs (CAOA), also participated as a representative of the Korean Neurological Society and Korean Epilepsy Society.

On 22 May, the first Joint Symposium of the Japan Epilepsy Society and Japanese Society of Neurology was held. The theme of the Symposium was “Frontlines of the Epilepsy Treatment for Practicing Neurologists”. Professor Tatsuya Tanaka and Professor Sadatoshi Tsuji served as Chairmen. Several significant papers were presented to an audience of more than 300. They included: “Why Don’t Medicines for Epilepsy Always Work?” by Professor Edward Bertram (University of Virginia, USA); “Selection of Proper Antiepileptic Drugs” by Professor Sunao Kaneko (Hirosaki University, Japan); “Clinical Characteristics and Treatment for New Onset Epilepsy in the Elderly” by Dr Naoki Akamatsu (University of Occupational and Environmental Health School of Medicine, Japan); and “Is the Genetic Diagnosis of Epilepsy Useful in Clinical Practice?” by Professor Shinichi Hirose (Fukuoka University, Japan).

The inclusion of epilepsy in the Annual Meeting of the JNS comes from the recognition that among the neurological diseases, epilepsy particularly requires long-term treatment, and such problems as the transition of care from infant-onset epilepsy to adulthood must be overcome. In addition, onset of epilepsy in the elderly has shown a marked increase in Japan, which has the longest life expectancy in the world. To address these problems, close collaboration between the JNS and the JES is particularly important. This Annual Meeting was especially noteworthy because of the milestone that it signifies a future strengthening collaboration between the two Societies. One example is the epilepsy guideline that was created jointly by the Japanese Society of Neurology, Japan Epilepsy Society, Japanese Society of Child Neurology, and Japanese Society of Neurological Therapeutics, under the strong leadership of Professor Emeritus Shigeki Kuzuhara, the Past President of the Japanese Society of Neurology, which is scheduled to be published in the autumn of 2010.

Photo:  ILAE Leadership celebrate the developing relationship between epilepsy and neurology in Japan. From left:  Bernhard Steinhoff (Chair, Commission on Therapeutics), Edward Bertram (Information Officer), Byung-In Lee (Chair, Commission on Asian and Oceanian Affairs), Tatsuya Tanaka (1st Vice President, ILAE), Sunao Kaneko (President, Japan Epilepsy Society, Member, Commission on Asian and Oceanian Affairs).

 

 

The Honduras Neurology Training Program: A World Federation of Neurology Pilot Program

Marco T Medina, MD

Neurology education in developing countries represents a challenge due to the myriad of socioeconomic and structural problems these countries are facing, including poor organization of established CME, limited access to educational and reference sources (libraries, Internet, journals, books, etc) and technical or financial difficulties in attending educational activities (1). Another major barrier to quality care for patients with neurological disorders in developing countries is a low ratio of neurologists to inhabitants. At present, the World Health Organization recommends one neurologist per 100,000 (2, 3).

Neurology education must be tailored for each country or region. The educational needs of developing countries are not satisfied with programs established for industrialized nations, and education programs must be organized around the individual epidemiological profile (1-3).

A number of strategies can be implemented in order to improve neurology education in developing countries, but the first step must be the evaluation of the profile of the neurological conditions and healthcare resources in each country. Such necessary data include demographic data, the availability of healthcare, the number of physicians and neurologists per capita, the epidemiologic profile of neurological diseases, the existence of neurology training programs and the existence of CME and/or periodic accreditation programs.

In 1998 Honduras had one neurologist per 325,000 inhabitants and all the neurologists were trained outside the country. The Education Committee of the World Federation of Neurology (WFN), in collaboration with the Postgraduate Direction of the National Autonomous University of Honduras, the Honduran Neurological Association, and the Honduran Secretary of Health helped establish the country's first Neurology Training Program in 1998. This program was established using a problem- and epidemiological-oriented methodology with oversight by an external WFN review board. By 2010 the program has resulted in a 50% increase in the national neurologist to inhabitant ratio, significantly improving the quality of patient care and promoting research in the neurosciences. The development of the Honduras Neurology Training Program may provide a valuable model for other developing countries with similar needs for neurological care. Based on this Honduras experience, members of the Education Committee of the WFN have established guidelines for neurology training programs in developing countries (2).

The Honduras Neurology training program has celebrated its 10-year anniversary. The results have been dramatic. The Neurology Department has become recognized as one of the best departments in the medical center and in Central America. A neuroscience PhD program is being developed. Importantly, every graduate of the neurology training program has stayed in Honduras. The program is attracting the better medical school graduates. Cities of secondary size are getting well-trained neurologists for the first time. Outcome assessment has shown, for example, a dramatic reduction of deaths from status epilepticus. A vigorous stroke prevention program has been initiated. Preventive programs for neurocysticercosis, a scourge of the country, are beginning to show results (2). Importantly, neighboring countries have begun to ask for similar help from the WFN.

As the ILAE considers the development of epilepsy programs and expertise in countries where the need is great but the resources limited, it may be important to take lessons from the Honduran experience in the development of expertise locally. The key elements are the national recognition of need, a careful assessment of the local issues and resources, taking the initiative by national medical community and some advice and support from organizations outside the country in the early phases of program development. The approach that we have developed in Honduras may be the means for developing sustainable specialty care in countries in which epilepsy care is quite limited.

References:

  1. Medina MT, Munsat T. Continuing medical education in developing countries. J Neurol Sci 2001;190:1–2.
  2. Medina MT, Munsat T, Portera-Sanchez A, et al. Developing a neurology training program in Honduras: a joint project of neurologists in Honduras and the World Federation of Neurology. J Neurol Sci 2007;253:7–17.
  3. Munsat T, Aarli J, Medina M, Birbeck G, Weiss A. International Issues: educational programs of the World Federation of Neurology. Neurology 2009 Mar 10;72(10):e46-9.

Marco T Medina, MD
3rd Vice President, ILAE and
Dean, School of Medical Sciences, National Autonomous University of Honduras, Tegucigalpa, Honduras

 

Report on the First IBRO/ILAE Neuroscience School — Fundamentals on Epilepsy: Neurobiological, Clinical and Therapeutic Approaches

Giuliano Avanzini

Held at Sunlodge Hotel, Accra, Ghana - 16 - 22 January 2010
Organizers: Giuliano Avanzini and Marina Bentivoglio
Local Organizers: Albert K Akpalu and Sammi K Ohene

The Neuroscience School included an introductory session in the arrival day, five full working days and a conclusion session in the departure day. Each full working day included four main lectures in the morning, practically oriented activities in the afternoon (with one partially free afternoon on Tuesday 19 January) and evening sessions. Each lecturer was asked to save some minutes for very specific questions. Moreover, the first hour after lunch was devoted to answer more structured questions on the morning speakers that the students, divided in three groups, prepared during the lunch time. 

Practically oriented activities included:

  • Technical lectures (including lectures of animal models of epilepsy, in vitro studies, etc)
  • Tutoring lectures / sessions led by one faculty member and with the involvement of all the other teachers. Such lectures / sessions included: how to give an oral presentation, how to write a CV, how to apply for fellowships, how to prepare a grant application, how to set up a lab for studies in epileptology, how to design a clinical trial, and how to design a questionnaire-based study.
  • Workshops in groups (students were divided in three groups rotating among three tutors, each responsible for a different module); these workshops were held in two afternoons.

The first workshop included three modules (histopathology of epilepsies, models of epilepsy, and video-EEG). The second workshop was held at the Department of Neurophysiology of the University Hospital and included one module on practical EEG recording (three students volunteered as patients) and two modules on how to read an EEG (using the EEG recordings that some Faculty members had brought).

  • Preparation and presentation of oral communications: work of students in six groups (with one tutor each) to prepare an individual oral communication of 10 minutes (8 minutes plus 2 minutes for discussion); oral communications were then delivered by each student in two parallel sessions in front of an audience of students and teachers.
  • Preparation and presentation of grant proposals: work of students divided in three groups to prepare a grant proposal. These were then “submitted” as Power Point presentations to a “Review Committee” that scored the proposals. The topics chosen by each of three “consortia” of students were very interesting (epidemiology of epilepsy in an African area, stigma of epilepsy in Africa, and testing of antiepileptic herbal medicines). The proposals were reasonably well-designed and very well presented (the proposal on herbal medicine “got the grant” consisting of chocolate cookies).
  • Preparation of a fictitious court trial (“neuroscience court trial”) and undertaking of the court trial: work of students to prepare the court trial in two teams (a Prosecution team and a Defense team, led by the Prosecutor and Defense Lawyer, respectively, who were Faculty members). For this latter activity, the accused was “Febrile Seizures” and a Prosecution Committee defined the charges (Cheating: Febrile Seizures are the first manifestation of severe genetic epilepsy; Murder: Febrile Seizures can evolve into Febrile Status Epilepticus, causing death; Assault: Febrile Seizures represent a cause of severe epilepsy; Theft: Febrile Seizures may lead to neurological impairment, hence rob the individual of a normal life; Threat: Febrile Seizures threaten the psychological well-being of the mother / father). A Judge, a Chancellor (Faculty members) and a Jury (made of students) were defined. The public trial session was held during the last half day and was an opportunity for some fun after a very heavy course, but was also a way to discuss very actively several aspects of febrile seizures.

 

The students participated very actively and with very high motivation in all the activities, gave some interesting information about some ongoing or planned tests in animal models of herbal medicines, and in general about the organization of the health care, teaching and research in their countries. The students also compiled a “glossary” (the translation of the words “brain” and “epilepsy” in their respective African language). They compiled evaluation forms (for each lecture and each activity) in which they overall expressed high appreciation of the School.

 

The Faculty members were intensely engaged through the duration of the course. The local organizers, Albert Akpalu and Sammy Ohene, did an excellent job dealing with all problems in a very effective and smooth way. Especially cumbersome were the visa procedures, which required a great effort from the local organizers (not only with invitation letters, but also with local arrangements at the airport), who should really be praised for their efforts.

One strong point of the School was the continuous inter-personal interaction that was encouraged consistently throughout the period, with personal and group discussions and intense brainstorming amongst the participants. On the graduation night, Giuliano Avanzini summed up the mutual feeling of every participant of the School, observing that the participants had spent together, during the intensive one week course, more time than they had spent with their respective families in the last three months.

 

Photo:  Accra School participants

 

Giuliano Avanzini
Co-Organizer

 

Chapter Meetings Available On ILAE-epilepsy.org

Chapter meetings can now be posted on www.ilae.org. Chapters can log in to the Chapter page and add their meeting dates or contact the Chapter Services office (gegan@ilae.org) to get the information posted. The information will appear under your Chapter name and Web site on your Chapter page.

Example:

Maintaining this information will help publicize your meetings as well as help leadership understand local Chapter activities.

 

Michael Prize 2011

The Michael Foundation is very pleased to announce the Michael Prize 2011 for the best contribution to scientific and clinical research promoting further development in epileptology. The Michael Prize is awarded biennially and specifically designed to attract younger scientists normally not older than 45 years of age.

It is our special pleasure to announce that starting with the Michael Prize 2011, the prize fund has been increased to 20.000 Euros.

To apply for the prize, submit up to three papers in English language, published or not yet published, from the period of 2009 – 2010 with a curriculum vitae by electronic mail to StiftungMichael@t-online.de before 31 December 2010.

 

Publication for Clinical Practitioners

With the kind permission of the World Federation of Neurology, we are pleased to make available to ILAE members, a publication from the WFN’s Seminars in Clinical Neurology series titled "Epilepsy: Global Issues for the Practicing Neurologist." This publication was chaired by Jerome Engel of the University of California at Los Angeles with a panel of international experts. The focus is on issues that are more commonly faced in the developing world, but this book also has broader application. You can also find this publication on the Web site of the WFN (http://www.wfneurology.org). The WFN site also has other publications in the Clinical Neurology series that you may find of interest.

Another publication that you may find of interest is the guidelines for epilepsy management published by the Indian Epilepsy Society, also available on the League’s Web site (http://www.ilae-epilepsy.org/visitors/initiatives/) or the IES (http://www.epilepsyindia.org).

This announcement is provided as a service to the international epilepsy community to make our members aware of materials that may be of interest to them.

Edward H Bertram
Information Officer

ILAE 2009 Annual Report on www.ilae-epilepsy.org

The 2009 Annual Report is available on the Web site at http://www.ilae-epilepsy.org/Visitors/Publications/AnnualReports.cfm.

The PDF document features end of term reports covering the accomplishments of the last four years from the outgoing officers and commissions. It features activities celebrating the Centenary of the League.  Recent award winners are also highlighted.

The 2010 Annual Report will be compiled this fall and will include reports from Chapters.  The format for chapter reports appears on the Chapter page of the Web Site. These reports will be due in October.

Bookstore on the ILAE Web Site

There has been a steady increase in the number of books published that are relevant to epilepsy that members of the League will likely find useful for their practice or research. However, keeping up with the books that are available is no easy task. To help make the job easier we have created this Bookstore as a service to our membership. In it publishers can provide information on their epilepsy-related books. They may also provide information on where and how to purchase the books. The League does not sell the books. http://www.ilae-epilepsy.org/booksales/index.cfm.

The Bookstore is in the early stages of evolution, and we expect to add new titles and publishers on a regular basis, so please check back frequently for new additions.

There are currently six books listed. If you have authored a book, please encourage your publisher to list their book on this Web site. The cost is minimal. 

Farewells Listing on Web Site

ILAE hosts a Web page where we commemorate our departed colleagues in epilepsy and the contributions that they have made to the field. It is our intention that this section for memorials be open to obituaries for anyone who has been active in the field of epilepsy in any capacity: clinical, social, scientific, psychological, to name but a few. There are no academic, professional or geographical requirements to be considered for inclusion in this section. There are  many great things that are done locally to improve the lives of people with epilepsy, efforts that are critical in the battle against this condition. Unfortunately some of the most important contributions are done away from the limelight and may not catch the attention of the larger international community. It is the intention of this section that anyone who has been active in the field be included and have their efforts and successes more widely known. The only real criterion is that the individual worked to help relieve the burden of epilepsy somewhere in the world. 

The memorial articles will be written by those who knew the person. The goal is to tell your colleagues in epilepsy who this individual was and what the contributions were. Photographs are welcome. http://www.ilae-epilepsy.org/visitors/farewells.

There are two parts to this section: recent deaths and archives. The latter will be publically available to allow League members to learn about those who have gone before and the contributions they made as well as to act as a resource for those who wish to look into the history of epilepsy and those who contributed to it. We look forward to your remembrances of our valued departed colleagues. Please send them or any comments or suggestions that you may have to farewells@ilae.org. We will also welcome multiple remembrances from our members. The success of this project will depend entirely on your efforts to help preserve the memories and the accomplishments of our friends and colleagues. 

 

Upcoming Congresses and Educational Events (www.epilepsycongress.org)

20th Meeting of the European Neurological Society
Berlin, Germany
19 - 23 June 2010
www.ensinfo.org

9th ECE
Rhodes, Greece
27 June - 1 July 2010
http://epilepsyrhodes2010.org/
7th Forum of European Science
Amsterdam, The Netherlands
3 - 7 July 2020
http://forum.fens.org/2010
2010 San Servolo Summer School – Advanced International Course: From Basic Knowledge and Clinical Trials to Rational Prescribing in Epilepsy
San Servolo, Italy
18 - 29 July 2010
http://www.epilepsy-academy.org

6th Latin American Congress on Epilepsy (6° Congreso Latinoamericano de Epilepsia)
Cartagena, Columbia
1 - 4 August 2010
http://www.epilepsiacartagena2010.org/

Mechanisms of Epilepsy and Neuronal Synchronization
Colby College, Waterville, Maine, USA
8 - 13 August 2020
http://www.grc.org/programs.aspx?year=2010&program=epilepsy

12th European Conference on Epilepsy and Society
Porto, Portugal
25 - 27 August 2010
http://www.epilepsyandsociety.org/

8th AOEC
Melbourne, Australia
21 - 24 October 2010
www.epilepsymelbourne2010.org
Online registration and abstracts are now open.
For information e-mail melbourne@epilepsycongress.org.

4th Asian Epilepsy Surgery Congress
Taipei, Taiwan
3 – 5 September 2010
http://www.aesctaipei.org.tw

Epilepsy and Depressive Disorders
The Westin Chicago River North Hotel, Chicago, USA
12 – 13 September 2010
www.epilepsyanddepressivedisorders.com

Third bid-workshop brains in dialogue on deep brain stimulation  
Warsaw, Poland
20 - 21 September 2010
http://www.neuromedia.eu/Sections.aspx?section=55.280

First Halifax International Epilepsy Conference
White Point Beach Conference Centre, Nova Scotia, Canada
30 September - 1 October 2010
Registration: janet.quenneville@nrc.gc.ca
Hotel Reservations: www.whitepoint.com

First International Workshop on Hemispherectomy
Utrecht, The Netherlands
30 September - 1 October 2010
http://www.umcutrecht.nl/subsite/Hemispherectomy-workshop/

Virtual International Congress of Neurology – Epilepsy 2010
October 2010 Online only – Registration free
Abstract deadline 15 August 2010
http://virtualneuro.net

2010 Epilepsy Symposia
Intercontinental Hotel & Bank of American Conference Center, Cleveland, OH
1 – 6 October 2010
http://www.clevelandclinicmed.com

International Symposium for Dietary Treatments for Epilepsy and Other Neurological Disorders
Edinburgh, Scotland
5 – 8 October 2010
http://site.matthewsfriends.org/index.php?page=global-symposium-2010

8th Asian and Oceanian Epilepsy Congress
Melbourne, Australia
21 – 24 October 2010
www.epilepsymelbourne2010.org

63rd American Epilepsy Society Annual Meeting
San Antonio, TX, USA
3 – 7 December 2010
Abstract Deadline: 15 June 2010
http://www.aesnet.org

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Acknowledgment
This publication is made possible in part by an unrestricted educational grant from Pfizer Inc.

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