Mission:

To initiate a sustainable collaboration in epilepsy education and care between Hospital José Maria Velasco of Tena, Ecuador and the International Neurology Foundation.

Aims and Objectives:

1. Education and Training

• Training primary health care workers and physicians in basic epilepsy diagnosis and management (including provision of donated EEG machine and training on its use with a novel simplified lead placement, see below)
• Educating ancillary hospital staff on proper seizure first aid
• Educating patients/families about epilepsy and epilepsy treatment
• Educating the public about epilepsy to increase awareness, reduce stigma, and increase competence in basic seizure first aid.

 2. Augmentation of Resources

• Donation of EEG Machine. 

 3. Sustainability

• Establishment of teleconferencing to continue clinical consultation
• Training of trainers to assure continued education in all areas above under education

 4. Assessment of epilepsy care in Tena, Ecuador

• Assess physician knowledge/training with regard to epilepsy
• Assess treatment gap
• Assess quality of life of epilepsy patients
• Assessment of public perception of epilepsy

Epilepsy in the Developing World

Reports on epilepsy from the World Health Organization (WHO), International League Against Epilepsy (ILAE), International Bureau for Epilepsy (IBE), and others have noted that:

Epilepsy is the most common serious neurological disorder, and one of the world’s most prevalent non-communicable diseases” (Scott et. al., 2001).

Of approximately 50 million epilepsy cases worldwide, 80% of such patients live in the developing world (Scott et. al., 2001), thus prevalence in some parts of the developing world is as high as twice as in the developed world (Meinardi et. al., 2001), likely secondary to increased incidence of infectious causes (neurocystercircosis, cerebral malaria, tuberculous meningitis, etc.) and poorer pre-, peri-, and post- natal care, all of which are preventable causes.

The incidence of epilepsy in the developing world may be as high as 190/100,000 (in Ecuador per Placencia et. al., 1992, for review see Scott et. al., 2001) compared to 50-70/100,000 for the developed world (Scott et. al., 2001)

The mortality rate due to epilepsy may be as much as three times higher in parts of the developing world as compared to the industrialized world (6.3 in Ecuador)   (Carpio et. al., 2005) vs. 2.1 in Rochester MN (reviewed in Forsgren et. al., 2005))

The stark contrast in mortality rate between the developing and industrialized world is likely secondary to the fact that as many as 90% of epileptics in the developing world may go untreated (For review see Scott et. al., 2001).

This treatment gap stems from both sociocultural factors (cultural beliefs regarding epilepsy causes and treatment, lack of knowledge/understanding about epilepsy in the public and/or medical staff, lack of prioritization) and practical/economic factors (e.g., distance of certain populations from health facilities, supply of drugs) (Meinardi et. al., 2001). Yet pharmacologic treatment for epilepsy is cost-effective, and could result in a huge reduction of the burden of disability adjusted life years (DALY), estimated at 7 million for epilepsy in 2000 (Chisholm 2005)

One reason for the extraordinarily large treatment gap for epilepsy in the developing world is a large diagnostic gap as well:  limited supply of physicians and diagnostic resources (and access to such resources when they do exist) can prevent prompt and accurate diagnosis, hence delaying treatment (Kale, 2002).  A recent study assessing the world-wide presence of and access to EEG, CT/MRI and other diagnostic modalities lumped the Americas together, so no conclusion can be drawn about South America (WHO. 2005), but we hypothesize that in rural communities such as the one in Tena, access to such diagnostics is likely quite limited if available at all, leading to delay and inaccuracy in diagnosis. Since 60-80% of epileptic patients can have their seizures controlled by antiepileptic drugs (Engel 2002) including those with chronic and previously untreated seizures  (Placencia et. al., 1993), the possible impact of a cost-efficient means of appropriate diagnosis and treatment in the developing world is potentially enormous for both patient quality of life, and reduction of epilepsy-associated costs, including loss of productivity (Chisholm, 2005).

These factors led the WHO, in conjunction with IBE and ILAE, to develop the Global Campaign Against Epilepsy to “improve acceptability, treatment, services and prevention of epilepsy worldwide.”  See: http://www.who.int/mental_health/management/globalepilepsycampaign/en/

Tena, Ecuador

Hospital José Maria Velasco of Tena, Ecuador is a public, level 2, 120-bed capacity hospital, the largest in the Napo Province of the Amazonian rainforest. Despite a population of nearly 13,000, there are no neurologists in Tena. However, in Ecuador as in much of the developing world, studies have demonstrated that epilepsy is more prevalent than in the industrialized world, as discussed above. Additionally, the developing world has an extraordinary treatment gap for epilepsy, creating a substantial burden of disease, and contributing to enormous costs secondary to lost work, not to mention decreased quality of life for epilepsy patients whose seizures, in many cases, could be cost-effectively managed. Thus, the need for increased awareness as well as skill in diagnosis and management would increase both health and productivity in this region.

Project

The goal of this project is a sustainable collaboration between BWH, the staff of Hospital José Maria Velasco, and the community of Tena for the diagnosis and management of epilepsy, as well as education of the public and hospital staff as to seizure first aid, and to reduce the stigma of seizures. During a mission in the spring of 2009, a donated EEG machine will be installed, and local staff will be trained in its use; patients will be seen with their physicians for counsel on diagnosis and management; workshops will be run for physicians on current practices in epilepsy diagnosis care; educational programs will be implemented for hospital staff, patients/families, and the public to raise awareness and destigmatize epilepsy, as well as to provide information about basic first aid for seizures. Local community health workers will be trained to continue the basic first –aid/stigma reduction programs after the mission, and will also be trained in EEG lead placement and study acquisition. As reviewed by Scott et. al., 2001, “the sustainability of a program depends on community participation, and therefore needs to be …integrated into primary health care” (p. 348). Sustainability will be further assured through the establishment of ongoing teleconferencing to allow for consultation between the staff of epilepsy specialists at the Brigham and Women’s Hospital and the Hospital José Maria Velasco in Tena.  Our first in a series of such teleconference took place this past June, and others are being planned leading up to the mission.

The leader of the project is Dr. Sebastian Espinosa, a neurologist from Ecuador who is completing fellowship training in Clinical Neurophysiology at Brigham and Women’s Hospital of Harvard Medical School. Dr. Espinosa has recently developed a simplified EEG lead placement, using only seven (7) leads at easy-to-identify anatomical landmarks (Espinosa et al., 2008). This set-up can be applied in less than 10 minutes with minimal training, and the overall sensitivity for correct interpretation was 95.1% (sensitivity for seizures =83.3%, epileptiform discharges = 100%, slowing =100%, burst suppression =100%, and normal studies 100%).   Among other educational activities during the mission, this simplified, yet highly sensitive EEG set-up and recording will be taught to local community health workers.  Thus, in future teleconferences, EEG studies can be reviewed by Tena physicians with BWH neurologists.

Summary

Education

Hospital Staff

Physicians: No neurologists: Therefore, Train primary care physicians in basics of diagnosis and management of epilepsy. Establish bridge for regular teleconferencing to allow  for continued consultation/collaboration

Ancillary staff: Seizure identification and  first aid; stigma reduction

Public

Patients/families: Seizure identification and  first aid; stigma reduction; basics of diagnosis, treatment, compliance

Civil servants, schools Seizure identification and  first aid; stigma reduction

Training of Trainers: Community health workers will be trained to continue provision of first aid/stigma reduction education programs

            Diagnosis and Treatment

Patients from the surrounding region will be seen by BWH neurologists along with local primary care providers to discuss diagnosis, management, etc

Donated EEG machine will be installed and local community health workers trained in EEG lead placement, study acquisition as per the simplified approach of Espinosa et al (2008)

            Teleconferencing

Dr. Espinosa, in collaboration with Centro Internacional en Neurociencias (CIEN) has already initiated teleconferencing with one community health worker in Tena and several neurologists in Quito, Ecuador using Skype. Thus, the feasibility and ease of this mode of consultation and collaboration has already been established.

Team

Unites States:

• Edward B. Broomfield, MD. Director, Division Epilepsy, EEG, Sleep Neurology;
• Barbara A. Dworetzky, MD. Director Clinical Neurophysiology fellowship BWH - Harvard Medical School.; Director, Comprehensive Epilepsy Program BWH – Harvard Medical School.
• Tracey Milligan, MD. Attending Epileptologist, Epilepsy Division BWH – Harvard Medical School. 
• Patricio Sebastian Espinosa, MD. MPH. Clinical Neurophysiology Fellow, BWH - Harvard Medical School.
• Aaron Berkowitz, MA. MD/PhD Candidate, Johns Hopkins/Harvard; Also will be trained by Anita Kauffman Foundation in epilepsy public education program

Ecuador:

• Nicole Falcone, PT.  Hospital José Maria Velasco, Tena

• Patricio Espinosa del Pozo, MD. Unidad de Neurociencias,  Facultad de

           Ciencias Medicas Universidad Central del Ecuador.

• Yaira R. Garzon, MD. Centro Internacional en Neurociencias

References Cited

Carpio A et. al. (2005). Mortality of epilepsy in developing countries. Epilepsia 46 (Suppl 11): 28-35.

Chisholm D (2005). Cost effectiveness of first line antiepileptic drug treatments in the developing world: a population level analysis. Epilepsia 46 (5): 751-759.

Engel J (2002). Epilepsy in the world today: medical point of view. Epilepsia 43(Suppl. 6): 12-13.

Espinosa PS, Das RR, Lucey BP, Karakis I, Kennedy KA (2008).A Seven Electrode Montage EEG as a Potential Screening Tool for Emergency Situations. Abstract submitted to the American Epilepsy Society Conference.

Forsgren L et al (2005). Mortality of epilepsy in developed countries: a review. Epilepsia 46 (suppl 11): 18-27.

Kale R, (2002). The treatment gap. Epilepsia 43 (suppl 6): 31-33.

Meinardi, H. et al (2001). ILAE Commission Report: The treatment gap in epilepsy: the current situation and ways forward. Epilepsia 42(1) 136-149 .

Placencia M, Shorvon SD, Paredes V, Bimos C, Sander JW, Suarez J, Cascante SM (1992). Epileptic seizures in an Andean region of Ecuador. Incidence and prevalence and regional variation. Brain. 115 (Pt 3):771-82.

Placencia et. al.  (1993). Antiepileptic Drug Treatment in a Commnity Health Care setting in northern Ecuador: A prospective 12-month assessment. Epilepsy Research (14) 237-244.

Scott RA, Lhatoo SD, Sander JWAS (2001). The Treatment of epilepsy in developing countries: where do we go from here? Bulletin of the WHO  79(4): 344-351.

WHO GCAE Website: http://www.who.int/mental_health/management/globalepilepsycampaign/en/

See Also

Burneo JB et al (2005). Understanding the burden of epilepsy in latin America: A systematic review of its prevalence and incidence. Epilepsy Research (66): 63-74.

Cruz ME, Schantz PM, Cruz I, Espinosa P, Preux PM, Cruz A, Benitez W, Tsang VC, Fermoso J, Dumas M. (1999). Epilepsy and neurocysticercosis in an Andean community. Int J Epidemiol. 28(4):799-803.

Del Brutto OH, Santibáñez R, Idrovo L, Rodrìguez S, Díaz-Calderón E, Navas C, Gilman RH, Cuesta F, Mosquera A, Gonzalez AE, Tsang VC, García HH. (2005). Epilepsy and neurocysticercosis in Atahualpa: a door-to-door survey in rural coastal Ecuador. Epilepsia. 46(4):583-7.

Fandino-Franky J. and Silfvenius H .(1999). World-Wide disparities in Epilepsy Care: A Latin American Outlook Epilepsia  40 (supp 8): 48-54.

Jallon, P .(1997). Epilepsy in Developing Countries Epilepsia 38(10): 1143-1151.

Murthy, JMK .(2003). Medical Management of Epilepsy: Some Problems and Pitfalls in Developing Countries. Epilepsia 44(Suppl 1): 38-42

Placencia et al. (1994). Characteristics of epilepsy in a largely untreated population in rural Ecuador. J Neurol Neurosurg Psych  (57) 320-325.

Manuscript by:

Aaron Berkowitz, MD, PhD. 

Brigham and Women's Hospital

Harvard Medical School

• Capacitación y entrenamiento al personal medico del Tena
• Atención a Pacientes con Enfermedades Neurológicas y Epilepsia.

Mas información: info@cien-ecuador.org