Latin America: the plan of action
[Part 4: Action; Mesa T]
In our region, we do not have epidemiological information about Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP is a challenge to investigate and important to understand, especially when we know that 85% of people with epilepsy live in developing countries. From the international literature we understand that SUDEP appears to affect mainly people with refractory epilepsy. Risk factors associated with SUDEP include generalized tonic-clonic seizures (GTC), the number of GTC’s, night time seizures, being male , early onset of epilepsy <16 years, having epilepsy for more than 15 years, and untreated epilepsy (Hesdorffer et al., 2011; Hesdorffer et al., 2012; Ryvlin et al., 2011; Sillampää & Shinnar, 2010). SUDEP is classified as ‘definitive’, ‘probable’ and ‘possible’ (Nashef et al., 2012).
SUDEP might involve changes in respiratory and cardiac function after GTC seizures, especially at night, as observed in a study of patients during EEG video monitoring (Ryvlin et al., 2013). It is also believed that physiopathologically there might be a combination of mechanisms. It has been discussed that, from an electroencephalographic (EEG) point of view, the generalized post-ictal suppression on EEG, especially of more than 50 seconds length, is associated with a proportional increase in the SUDEP risk. This reflects an autonomic deregulation, with a deep post-ictal coma and a slow awakening. It is suggested that the serotoninergic system, which has a role in wakefulness and in the REM sleep inhibition, might be altered (Bozorgi & Lhatoo, 2013). Also, it has been considered that epileptic seizures somehow might involve the nucleus of the brain stem, where the cardiovascular, respiratory and wakefulness controls are located, especially those involving serotonin (5-HT) (Richerson, 2013). Study on animals with mutations of Gen SCN1A, which is linked with Dravet Syndrome, suggest that SUDEP is causing a parasympathetic hyperactivity, post seizure crisis, leading it to a bradycardia and lethal ventricular electrical dysfunction (Kalume et al., 2013). There are also studies that research the effect of sleep deprivation in the expression of microRNA of the frontal cortex and hearts of rats with induced epileptic status (Matos et al., 2014).
In Latin America, generally we do not have good statistics, autopsies are not always performed, and SUDEP is not confirmed. The health teams are unlikely to talk about the SUDEP with the patients (Núñez, 2011).
When should we talk about it? In our region, generally we do not talk about the issue unless the patient or the family asks. When an epilepsy death happens it is necessary for us to understand the family and what people expected, but in this globalized world there is no doubt that there is a growing concern, by patients and families, that doctors should suggest who has more risk and the preventive measures that should be taken.
In Latin America, a study by Devilat followed 862 children over 4 years. Seven of the children passed away. In 4 cases the death was sudden unexpected death in epilepsy. One was ‘definitive’ by autopsy, 2 ‘probable’ and 1 ‘possible’. The majority had refractory epilepsy and precarious socio-economical circumstances. For the four patients that had an unexplained death, SUDEP was not included in the cause of death. The most frequent complaint of the families was that they did not know anything about the risk of death in epilepsy (Devilat et al, 2013).
A team led by Dr Scorza and Dr Cavalheiro at the University Federal Sao Paulo, Brazil, has been very active in the SUDEP issue, especially in children. A study of 835 patients showed that 1.4% of the deaths were due to SUDEP. Risk factors which stood out were: generalized tonic-clonic seizures, chronic epilepsy out of control, and polytherapy. Recommendations to avoid risk factors were given including: epilepsy education for patients; improvement of seizure control with drugs as well as access to surgery; stress reduction; sports participation; dietary management; nighttime supervision; and knowledge about cardiopulmonary resuscitation (Scorza et al., 2011).
In the last Latin American Epilepsy Congress, September 2014, in Buenos Aires, Argentina, epidemiological aspects of mortality of epilepsy were discussed by Ettore Beghi, in the context of an ILAE (International League Against Epilepsy) commission, to suggest a guideline for future epidemiological studies in our region. Dr Scorza, from Brazil, talked about the epilepsy mortality from SUDEP and other causes (VIII Congreso Latino Americano de Epilepsia 2014).
In the Strategy and Plan of Action on Epilepsy for the Americas, the 3rd Area, “education and sensitization of the population, including the people with epilepsy and their families”, should record the risk factors of SUDEP, with the goal of reducing deaths in epilepsy. Also, in the 4th Area of this Plan “strengthening of the ability to produce, assess, and use information on epilepsy”, specifically in section 4.1, aimed at improving information systems and section 4.2 which addresses strengthening the research about epilepsy, clearly, SUDEP should be specified (Organización Panamericana de la Salud, 2011).
In our region of Latin America, in relation to SUDEP, it is necessary to participate in global action: improving the awareness of the major risks of mortality for people with epilepsy; improving understanding of how and when to communicate the risks of SUDEP in this cultural setting; to keep increasing the centers researching SUDEP in the region; to improve the statistics so we know the real magnitude of the problem; to continue giving space to the issue in our meetings and regional congresses; and to include and specify SUDEP action in the Strategy and Plan of Action on Epilepsy for the Americas.
President of the IBE Latin American Committee
Pediatric Neurologist. Pontificia Universidad Católica de Chile
How to cite:
Mesa T. Latin America: the plan of action. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.