It is known that the mortality in epilepsy is two or three times higher than in the general population, but in Chile we do not have studies about it. This situation gets more difficult due to the lack of precision in the death certificates and the refusal of many relatives to permit autopsies, thus we are unable to determine the cause of death. Throughout the different regions of our country, there are places in which there are not reports of mortality by epilepsy, denoting that this is a concept that is not used uniformly by all the professionals or general doctors.

As the above background demonstrates, it has been a major difficulty to diagnose SUDEP, since the first barrier is to have an agreement regarding its definition. The current definition is ‘the abrupt, unexpected death in patients with epilepsy, with or without witnesses, non traumatic and in absence of suffocation, with or without evidence of crisis and with exclusion of a documented epileptic state, in which the autopsy does not reveal a cause of death from a toxicological or anatomical origin’ (Nashef 1997). If we also want to add the three levels of certainty: a) definitive SUDEP: considers the full definition b) probable SUDEP: an autopsy has not been performed c) possible SUDEP: other possible causes of death, but death by epilepsy cannot be ruled out. These levels allow us to check and establish the facts in a more orderly fashion, but in general, this has not been done.

In Chile, reports of SUDEP were presented in the First Latin American Epilepsy Congress in 2000, held in Santiago. Devilat et al. describe in four years, seven children with epilepsy who died in an epilepsy centre, with regular controls, from a total population of 862 patients. Four children qualified as SUDEP, that is 0.46% of the cohort. One definite, two probable and one possible. In none of them, the death certificate makes any reference to death by epilepsy. All the patients were very poor, and with the exception of one family, they all received psychosocial support, revealing they did not know about the risk of sudden death in epilepsy.

The League Against Epilepsy, in its educational program, has been considering this subject with an increasing interest. It has also been considered at the Latin American regional events, but we are aware that there is plenty of work to be done about it, as it is requested by the families. It is necessary that the health team, the patients and the families of people with epilepsy know the risk factors (gravity of the seizure, the type of seizure and the type of epileptic syndrome, neurological compromise, use of antiepileptic drugs, nocturnal seizures, age and others). On the other hand, it is convenient to continue researching for the mechanisms of its pathogeny and the anatomopathological findings, in order to be able to take preventive measures. The role of education in SUDEP is very important, to raise awareness of the risks, frequency and causes, and in that way to give support to the families and the community of the individual with SUDEP.

En Espanol

Se sabe, que en epilepsia la mortalidad es dos a tres veces superior que en la población general, pero en Chile no tenemos estudios al respecto. Esto se ve dificultado por la falta de precisión en los certificados de defunción y la negación de realizar autopsias por muchos familiares, con lo que no podemos precisar la causa del fallecimiento. Es así que a lo largo de las diferentes regiones de nuestro país, hay lugares que no se reporta mortalidad por epilepsia, denotando que no es un concepto que se maneje uniformemente en todos los profesionales o médicos generales. Con los antecedentes previos, mayor dificultad ha sido el diagnosticar la MUERTE SÚBITA POR EPILEPSIA (MUSEP), ya que la primera barrera ha sido el ponerse de acuerdo con su definición, siendo actualmente “la muerte brusca, inesperada, en pacientes con epilepsia, con o sin testigos, no traumática y en ausencia de sofocación, con o sin evidencias de crisis y con exclusión de estado epiléptico documentado, en el que la autopsia no revela una causa de muerte de origen toxicológico o anatómico”. Si además quisiéramos agregar los tres niveles de certeza: a) MUSEP definitiva: considera la definición completa. b) MUSEP probable: a la definición le falta la autopsia. c) MUSEP posible: son posibles otras causas de muerte, pero no puede excluirse la por epilepsia. Estos niveles contribuyen a que constatemos y consignemos los hechos de forma más ordenada, pero en general no se ha hecho.

En Chile, reportes de MUSEP, podemos encontrar dentro de los trabajos presentados al Primer Congreso Latinoamericano de Epilepsia, el año 2000, realizado en Santiago de Chile. Devilat y col., describen en 4 años, 7 niños con epilepsia que mueren a un centro de epilepsia, con controles regulares, de una población total de 862 pacientes. Cuatro niños se calificaron como MUSEP, es decir un 0.46 % de la casuística. Uno definitivo, dos probables y una posible. En ninguno de ellos el certificado de defunción hizo alusión a muerte por epilepsia. Todos eran pacientes de muy escasos recursos y excepto una familia, todas recibieron apoyo psicosocial, manifestando que nada sabían del riego de muerte por epilepsia.

La Liga Chilena contra la Epilepsia, dentro de su programa educativo, ha considerado con creciente interés este tema como también en los eventos regionales Latinoamericanos, pero estamos conscientes que aún falta mucho trabajo al respecto, tal como los familiares nos lo solicitan.

Es preciso que el equipo de salud, los pacientes y los familiares de individuos con epilepsia, sepamos los factores de riesgo (gravedad de las crisis, tipo de crisis y tipo de síndrome epiléptico, compromiso neurológico, uso de medicamentos antiepilépticos, crisis nocturnas, edad y otros). Por otra parte se hace conveniente seguir investigando los mecanismos de su patogenia y los hallazgos anatomopatológicos, para poder tomar medidas de prevención. Es importantísimo la educación en MUSEP, tanto por saber los riesgos, frecuencia, causas y así poder brindar un apoyo a la familia y al entorno del individuo que presenta una MUSEP.

Tomás Mesa, MD. Chile, Child Neurologist
Past President of the Chilean League Against Epilepsy
Pediatrics Department of the Catholic University of Chile

Chile has an estimated population of 15.5 million inhabitants. Approximately, 65% of the people receive their medical coverage from the government and the majority are covered for their entire medical needs and medicines. We can always find things that can be improved and we’ve been involved in a health reform in the last couple of years. Our health indexes show a mortality rate of 5.3/1000 inhabitants and an infant mortality rate of 8.3/1000 live births. The most important causes of death are circulatory, cancer and trauma. All of these, place us near the demographic indexes of developed countries and present us new challenges to improve them. In terms of epilepsy, a National Plan for rational management was developed and is being used since last year. The Plan defines uniform criteria and actions to be taken at public primary and secondary level.

This plan ensures treatment with phenobarbital, phenytoin, carbamazepine and valproic acid for all patients. It also establishes frequency of blood testing, EEG, neuroimaging and referral criteria to neurologists. SUDEP has not been included in these guidelines as a specific point and so far it has not been considered a priority for this national plan. Reducing mortality is an important aim of epilepsy management as it is 2-3 times higher than in the general population. SUDEP accounts for approximately 2% of deaths. This has been the subject of several publications, but so far there’s nothing definitive regarding its aetiology, management or prevention. Whether concomitant diseases are risk factors for SUDEP is unknown. In general terms SUDEP patients have been found to be of a younger age and they are commonly found dead in bed with evidence of having had a seizure. Studies on SUDEP are difficult to conduct and interpret because it is relatively uncommon and a large number of cases are needed to achieve clinical significance.

SUDEP is an issue that hasn’t been addressed in a specific way in our Epilepsy Program and its approach depends on each physician. It has been a growing concern for neurologists as reports appear in literature and the risk of malpractice suites is more frequent. Last year it was discussed in our yearly National Epilepsy Meeting and it is still a thing that needs to be solved in terms of management and interaction with patients. In general, Chilean doctors are aware of the problem and should discuss in more detail, matters such as suicide, accidents, injuries and SUDEP. Some centres in Santiago, Chile´s capital, keep records and study their mortality cases according to local guidelines. Their families are instructed to contact their physician as soon as possible if the patient dies, in order to ensure appropriate study of the case. Unfortunately, sometimes this is done too late and in about half of the cases SUDEP has been suspected but not confirmed. So far there is no accurate registry of the problem and probably we would need a national survey in order to establish the magnitude of the problem, to describe the characteristics of our affected population, and to settle common guidelines that may benefit our patients and reduce the problem. The next Latin American Epilepsy Congress that will be held in Guatemala during 2006 will include as one of the main topics ‘Death Prevention in Epilepsy’. This initiative may be a strong support to start national protocols in Latin-American countries about SUDEP.

In summary, SUDEP is a challenge and there is no official policy about it. There are only isolated initiatives and we need to work on common protocols to ensure adequate registry of the cases and to establish some guidelines that could reduce SUDEP cases.

Carlos Acevedo & Keryma Acevedo, Paediatric Neurologists
Clínica Alemana, Santiago, Chile.

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.