2013 PAHO Report
The Report on Epilepsy in Latin America and the Caribbean (2013) prepared by the Pan American Health Organization (PAHO/WHO) with the support of the International League against Epilepsy and the International Bureau for Epilepsy is now available.
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Commission Annual Reports
A. Task Force on Education:
Members: Sheryl Haut (Leader), Jean Gotman (Canada), Nizam Ahmed (Canada), Juan Ochoa (USA), Jose Cavazos (USA), Jorge Vidaurre (USA), Arthur Grant (USA), Carly Mann (USA), Marco Medina (Chair, Latin American Commission), Elza Yakubian (Chair, Education Commission).
The mission of the Task Force on Education of the NAC has been to promote and improve epilepsy education and care in North and Latin American regions. The Task Force decided that the best approach to achieve its goals was to develop long-lasting academic and clinical relationships between Latin American (LA) and North American (NA) centers. This could be best accomplished by establishing partnerships between LA and NA groups or centers. Accordingly, the Task Force developed and supported collaborations between epilepsy centers in NA, LA and the Caribbean, utilizing three methods implemented in three phases: Phase 1: Pairing of centers and visiting professorships. Phase 2: Telemedicine based partnerships to provide continuity. Phase 3: Extended mentorships consisting of rotations or visits of specific personnel from LA centers to NA centers. With significant additional support from UCB through an educational grant obtained by Jose Cavazos, Phase 1 of the program was launched in 2008. A standard application and matching process was developed, and a call for proposals was sent out to AES members and publicized through the Latin American Commission. Applications were reviewed by the Task Force and were selected based on specific criteria, including merit of the planned curriculum, experience of the applicant, and viability of long term collaboration.
i. Phase 1:
Six visiting professorships were awarded in the first year, and four in the second. Thus far, visits have taken place between faculty of North American epilepsy centers, and centers in the following countries: Ecuador, Panama, Costa Rica, Mexico, Peru, Jamaica, and Colombia. During these visits, the visiting faculty gave lectures, conferences and rounds to a variety of health care providers, and met with hospital, local and government officials to promote the development of epilepsy centers and/or epilepsy surgery. These visits were felt to be very successful based on feedback from both the visiting faculty and the receiving centers. Each visiting faculty submitted a report of the visit, which was reviewed by the Task Force. Specifics of these professorships are as follows:
1. David Clarke, M.D. of the University of Tennessee HSC at Memphis, has partnered with the Jamaican Chapter of the ILAE and has extended his participation to the English-speaking countries of the Caribbean and also the Dutch Antilles. He also received significant matching funds from the Le Bonheur's Children Medical Center in Memphis to develop epilepsy care in the region. Dennis and Susan Spencer from Yale University have also participated in this collaboration with the Caribbean.
2. Patricio S. Espinoza, M.D. of Brigham & Women's Hospital, Harvard Medical School, is engaged in partnership with Quito, Ecuador, at the Universidad San Francisco de Quito, and has begun teleconferences with 6 sites from different regions within Ecuador. Pictures posted http://picasaweb.google.com/PS.Espinosa/IVSeminarioInternacioncalEnNeurociencias2008?auth key=lm0QT95yXOA.
3. Jorge Burneo, M.D. of the University of Western Ontario, Canada, is engaged in a partnership in Lima, Peru and participated in a series of events with the Peruvian Chapter of the ILAE. This has involved an extremely promising initiative on Neurocysticercosis and epilepsy.
4. David Labiner, M.D. of the University of Arizona, partnered with neurologists in Costa Rica quite successfully, has established teleconferencing, and plans for return visits are in place.
5. Greg Krauss, M.D. of John Hopkins University, has established a successful partnership with the group in Panama.
6. Jose Cavazos, M.D. of the University of Texas Health Science Center has partnered with the Hospital Infantil de Mexico, which is the main pediatric hospital in Mexico City.
7. Dr. Juan Ochoa, MD of the University of Florida has partnered with the group in Cartagena, Colombia and plans are underway to expand to other centers in Colombia.
ii. Phase 2:
This phase began at the conclusion of each visiting professorship, with a telemedicine partnership established between the visiting faculty and the Latin American or Caribbean site. These partnerships are ongoing. Admittedly, this is a challenging aspect of the initiative and one that requires not only experience of Task Force members, but also perseverance and a level of maturity in the partnership that can allow participants to benefit from this method.
iii. Phase 3:
This is contemplated as a later stage that will emerge from a maturing relationship between centers and which will be required for development of targeted epilepsy expertise in LA centers. In the planned Phase 3 of the project, repeat visits by North American faculty will take place, and members of the Latin American centers may visit the North American centers to receive further training.
B. Task Force on Disparities in Epilepsy Care
Members: Jorge Burneo (Leader), Sam Wiebe (Canada), Allan Hauser (USA), David Thurman (USA, Centers for Disease Control), Margaret Jacobs (USA, NIH), Karen Parko (USA, Public Health Service), Charles Begley (USA), Nathalie Jetté (Canada), Jack Pellock (USA).
The purpose of the Task Force was to frame the issues regarding disparities in epilepsy in the North American region (including the English-speaking Caribbean), to include the development of an agenda for research, research capacity building, and outreach. The specific tasks were to inform the NAC regarding the occurrence and extent of disparities in epilepsy, the nature of the disparities (points of intervention), and the array of potential interventions. The task force conducted a systematic review to evaluate the current knowledge about the issue of disparities in the region, and to identify potential interventions.
The systematic review was completed, and presented as a platform presentation during the last American Epilepsy Society meeting in Seattle. This resulted in a manuscript that was submitted to Epilepsia after approval by the Commission and the Executive Committee of the ILAE, and has been subsequently accepted for publication. The primary outcome of this systematic review of the current state of knowledge was a set of recommendations regarding the next steps to address the identified disparities. Five areas were identified:
i. Epidemiology of epilepsy. Although the research is relatively sparse, minority populations have a higher frequency of epilepsy than whites. However, minority populations other than African Americans have not been studied to any extent. The reasons for the racial/ethnic differences in the occurrence of epilepsy remain to be identified. There is no epidemiological information about epilepsy in the English-speaking Caribbean.
ii. Knowledge and attitudes about epilepsy. Due to the absence of comparative studies, it is impossible to know how much and in what dimensions knowledge of or attitudes toward epilepsy differ from feelings concerning other chronic disorders. Community attitudes appear to have improved over time, and education can be a positive factor. Specific ethno-cultural beliefs would need to be addressed. The lack of knowledge of persons with epilepsy (PWE) themselves is of concern.
iii. Disparities in employment and education. There also appear to be discrepancies between different studies in terms of employment status in patients with epilepsy when compared with those without it. However, there appears to be a lower educational level attained in those with epilepsy compared to the general population. More studies are needed to clarify these discrepancies.
iv. Access to medical and surgical care. While there is a suggestion that African Americans have higher rates of hospitalizations and emergency room (ER) visits, and lower rates of epilepsy surgery, because insurance status and low socioeconomic status (SES) also had an association in some of the studies, it is not clear whether racial/ethnic factors causally relate to rates of care. In Canada, aboriginals with epilepsy were less likely to see a neurologist and more likely to visit the ER, a finding which could not be explained by lower SES or rural residence. Other disparities in population-based studies include more ER and fewer counseling visits in people living in less densely populated and remote areas, and more barriers to care in those living in urban areas. Women and children are more likely to see a neurologist than men and adults respectively. In two studies with different methods, cultures, and populations, poor compliance with AEDs was associated with external factors such as lower income, insufficient insurance and poor relationship with treating clinicians; as well as with internal factors such as not having regular responsibilities. Clinical, demographic and cognitive factors were not associated with compliance with medication. Disparities in mental health care have been documented in people with epilepsy. Lower rates of mental health treatment in children with epilepsy are associated with older age, lower parental education, higher verbal IQ, and AED polytherapy.
v. Outcomes following medical and surgical treatment. There is little research on the role of SES, gender, race/ethnicity, age, education, and co-morbidities in relation to outcomes following medical treatment for people with epilepsy. The published data are not sufficient to reach conclusions regarding the relationships between these factors. Information is scarce regarding possible disparities in epilepsy surgery outcomes. More studies, particularly with a large sample size, are needed.
C. Task Force for Caribbean Development:
Members: Amza Ali (leader, Jamaica), Robert Fisher (USA), Jeff Noebels (USA), Sharon Whiting (Canada, formerly Jamaica), David Clarke (US formerly from Antigua), Neil Cruz (US Virgin Islands)
The mission of this Task Force was to improve knowledge of epilepsy in all categories of health care workers in Jamaica and in the rest of the English-speaking Caribbean (ESC), and to advance epilepsy care in the ESC. Outlined below is a description of the initiatives, methods and results:
i. Quarterly JLAE educational meetings: These events are attended by a wide variety of interested medical and other health care workers. Speakers have included local practitioners but the keynote speaker has often been a well-known epileptologist from North America or Europe.
ii. Biennial North American Regional Caribbean Congresses: The inaugural congress was held in Montego Bay in May 2008. The event was a truly collaborative endeavor involving the North American Commission of the International League Against Epilepsy (ILAE), the Jamaican League Against Epilepsy (JLAE), the Jamaican Epilepsy Association, the American Epilepsy Society (AES), and The Canadian League Against Epilepsy (CLAE), as well as the international corporations Novartis and Bank of Nova Scotia. The high profile of the congress was evident by the participation of regional dignitaries and of regional and international speakers. During the official opening ceremony, the Honorable Rudyard Spencer, Minister of Health of Jamaica, eloquently acknowledged the difficulties and stigma facing persons with epilepsy, and pledged his commitment to work with the JLAE to improve the care and quality of life of people with epilepsy in Jamaica. The success of the First North American Regional Caribbean Congress of Epilepsy allows us to envisage an era of new initiatives and collaborations that will lead to better care and quality of life of patients with epilepsy in this region. The Second North American Regional Caribbean Congress, will take place in Curacao in 2010.
iii. Monthly Case Conferences and Pre-surgical evaluation group: These monthly events were started in late 2008 and led to the formation of the pre-surgical evaluation group. Initially the group was composed of five adult and pediatric neurologists as well as a psychiatrist; more recently the core membership expanded to include a neuropsychologist, neurosurgeon and a neuroradiologist. This new group, based at the University and co-chaired by Dr Amza Ali and by Professor Ivor Crandon, Head of the Department of Neurosurgery, are dynamic and spirited events, with the intention of arriving at a consensus in the management of difficult cases. Difficult cases evaluated and managed to the fullest possibilities locally have been sent to Dr Dave Clarke at the University of Tennessee for further evaluation and investigation, particularly involving high quality imaging and magnetoencephalography. This has been made possible by the North American Commission’s selection of Dr Clarke as Visiting Professor to the Caribbean Region. He has already made three trips to the Caribbean, Jamaica initially and subsequently Trinidad. The group further benefited from the recent visit to Jamaica of Professors Dennis and Susan Spencer in April, also sponsored by the North American Regional Commission as part of the Visiting Professorship program.
iv. Expansion of the JLAE to include the wider English-speaking Caribbean territories (ESC): When the NAC was formed it was proposed that the JLAE would be more effective if its membership was expanded to include interested healthcare workers from the rest of the English-speaking Caribbean, based on the existing political affiliation that already exists in the region, ie., Caricom (Caribbean Community). This concept was discussed with the ILAE Executive Committee including Peter Wolf and Solomon Moshe, and favorably viewed. Consequently in 2006 this was supported by Dr. Henry Fraser, Dean of the Faculty of Medicine in Barbados, and 15 physicians including neurologists, internists, psychiatrists and pediatricians joined as associate members.
v. Interaction with the Jamaican Epilepsy Association (JEA). This is the local chapter of the International Bureau for Epilepsy (IBE). This organization has been a great success and since its establishment in 2002 has worked closely with the JLAE to achieve many common goals. The task force’s emphasis has been on strengthening collaboration, which is a model that could very well work in other countries and regions. Together we have focused on educational initiatives especially the hosting of conferences, smaller gatherings with patients and the development of educational pamphlets and posters for free distribution as well as a children’s book for epilepsy, “Way to go Flash!” Perhaps the most significant joint achievement was fundraising for and establishing the only Video-EEG facility in the ESC in 2004. This unit has evaluated approximately 100 patients so far, contributing greatly to more accurate diagnosis and management. This collaboration will be essential as the JLAE with its North American partnerships established through the NAC, moves on to offer epilepsy surgery in the region.
D. Task Force for Island of Hispaniola Development (Haiti and Dominican Republic):
Members: Lionel Carmant (leader, Canada), Marco Medina (Latin American Commission), Diogenes Santos-Viloria (Dominican Republic), Michel Baldy Mouliner (EUREPA), Alex Elie (Haiti), Marcel Sévere (Haiti), Farah Lubin (USA), Jose Ferreira (USA).
The mission of the Task Force was threefold: i) to bring epilepsy care to Haiti; ii) to open an Epilepsy Surgery Center in Santo Domingo, and iii) to reduce the incidence of neurocysticercosis and epilepsy related to neurocysticercosis on the Island.
i. Epilepsy clinic in Haiti: On 4 June 2008, la Clinique d’épilepsie de Port-Au-Prince, an outreach initiative of the NAC opened its doors to patients. Haiti, the French-speaking half of the island of Hispaniola, had no neurologist or trained electroencephalographers. There were only two conventional EEG machines (one of which is 8-channels), to serve a population of 8 million, and what recordings were done were reviewed outside of the country. At its first business meeting in 2006 the NAC, identified Haiti as a region with some of the most urgent needs for improved epilepsy care in the region and in the world. This successful ILAE-led development is a true collaborative effort involving Centers and agencies in Canada, the USA, and the generous support of neighboring Dominican Republic. Training for a Haitian EEG technologist and a Haitian Epilepsy nurse took place in the Dominican Republic under the supervision of Diogenes Santos Viloria for six months. Simultaneously, Dr Marcel Sévere, a young pediatrician from Haiti obtained EEG training for three months in Montreal under the supervision of Dr. Lionel Carmant. Subsequently, thanks to a generous gift of a used EEG machine from Stellate EEG Systems Inc., Dr Carmant and an EEG technologist from Montreal travelled to Port-Au-Prince to help install the EEG machine in early June 2008. The team stayed for a week, seeing patients and performing EEGs with the local team, led by Dr Alix Elie a neurosurgeon who is the national epilepsy specialist. Dr Elie is now volunteering to be in charge of the clinic, and Dr Severe reads all EEGs, e-mailing Dr Carmant difficult tracings. This was accomplished with $6,000 funding from the ILAE. Dr Carmant then secured matching funds from the Canadian Neurological Sciences Foundation and submitted an application for a $10,000 grant to the Savoy Foundation for Epilepsy in Quebec, Canada. Dr Farah Lubin assisted in seeking funds for the clinic. The epilepsy clinic in Port-Au-Prince Haiti has developed rapidly. Since June 2008, more than 500 patients have been evaluated at the clinic, some of these patients travel from rural areas to receive epilepsy care. The task force will be providing ongoing support via quarterly visiting professorships from North American Commission members. Enduring resources require local educational efforts. In this regard, progress is being made to include teaching about epilepsy in the neurology curriculum at the Faculty of Medicine of the National University (Université d'Etat d'Haiti). The latter will be done in collaboration with the Association of Haitian Physicians (AMHE).
ii. Neurosurgery center in Santo Domingo: This endeavor has relied mainly on the efforts of Drs Rivera and Santos Viloria. Dr Rivera has supervised the construction of a neurosurgical unit in Santo Domingo. Dr Santos Viloria came to Montreal to get a refresher in video-EEG and corticography recording. Dr Ferreira from Florida has offered video-EEG equipment as well as help to review recordings and perform investigation. In addition, Dr Selim Benbadis from Florida has put together a professorship program that will help implement this epilepsy surgery center. This part of the project has been done with no funding, but the professorship is associated with a $5,000 grant from the Educational Task force to support for travel between the centers.
iii. Neurocysticercosis Project: We have begun to assess the presence of neurocysticercosis in the endemic region of the island which encompasses the border between Haiti and the Dominican Republic. The project was developed in consultation with NIH-supported and renowned epidemiologist Dr. Hugo Garcia from Peru. We have started on the Dominican side of the region. A preliminary census performed by Drs Santos Viloria and Rivera suggest a high incidence of epilepsy in this region. With $20,000 of funding from the ILAE NAC, we will perform the screening of 100+ patients with epilepsy per year for two years to assess the frequency of neurocysticercosis in this region. This approach has been used successfully by Dr Garcia and will help us obtain funding to perform a similar estimate on the Haitian side and to begin a large scale prevention campaign to reduce the prevalence of the disorder. To enhance recruitment, we will reach out to influential individuals in the communities, such as the local physicians and priests.