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In Canada, the incidence of SUDEP has not been evaluated. Epilepsy Canada reported that the incidence of SUDEP was lower than the one for asthma, a condition with much less taboo than epilepsy. The incidence was higher than for Sudden Infant Death Syndrome, a condition that gets much more media attention and special research initiatives than epilepsy. However, the awareness of SUDEP has increased with recent Canadian publications over the past 3 years.
In a recent review Tellez-Zenteno, Ronquillo & Wiebe (2005) reviewed the incidence and risk factors of SUDEP in the literature, and the risk factors appear to be similar worldwide. In studies using non-SUDEP deaths as controls the most consistent risk factors were a seizure preceding death, and subtherapeutic antiepileptic drug levels. In studies that used persons living with epilepsy as controls the main risk factors for SUDEP were youth, high seizure frequency, high number of antiepileptic drugs and long duration of epilepsy. A 10-year paediatric review in Ontario by Donner, Smith & Snead (2001) revealed that the risk factors observed in adults might not apply to children. Low serum levels of anticonvulsants and polytherapy did not appear to be risk factors in their population.
An earlier Epilepsy Canada publication had led to a surprisingly severe reaction from both patients and physicians. Most reactions were negative but for different reasons. Some individuals, mainly patients, were surprised by the fact they did not know about the risk of sudden death associated with epilepsy. While on the other side, both patients and physicians believed that overstating this risk might even further negatively modify the attitude of individuals and insurance companies towards people with epilepsy. However, this helped our group and others realise that we need to discuss this with patients, especially those at risk. We believe that knowledge empowers individuals increasing their chance to live a full life.
Our local epilepsy organisation (Epilepsie Montreal Metropolitain) has not discussed the issue over the past 10 years in our annual information meeting. Again, I believe the possible negative reaction of patients and families has made this a difficult issue to tackle. In future years, better ledge of the worldwide incidence of the condition, including in Canada, could make it much easier to discuss this topic.
Au Canada, la fréquence de MSISE (Mort Subite Inexpliquee Secondaire à l’Épilepsie) n’a jamais été évaluée. Épilepsie Canada rapporte que l’incidence de MSISE est cependant inférieure à celle de la mortalité reliée à l’asthme, une condition porteuse de beaucoup moins de tabou que l’épilepsie. Mais son incidence est supérieure à celle de la Mort Subite du Nourrisson, une condition beaucoup plus médiatisée et subventionnée que l’épilepsie (Lumina, Automne 2004). Cependant, une prise de conscience s’est effectuée au cours des 3 dernières années avec des publications canadiennes sur la MSISE
Une revue récente de la littérature (Tellez-Zenteno, Ronquillo & Wiebe 2005), suggère que l’incidence et les facteurs de risque pour la MSISE sont identiques partout dans le monde. Les études comparant son incidence à celle des morts non subites montrent que une crise récente et des niveaux sous thérapeutiques d’anticonvulsivants sont les principaux facteurs de risque. Quand on compare à tous les patients souffrant d’épilepsie, les facteurs de risque sont le jeune âge, une forte fréquence de crises, la polythérapie et la durée prolongée de l’épilepsie. Cependant, une étude rétrospective sur 10 ans en Ontario (Donner, Smith & Snead 2001) montre que les facteurs de risques ne sont pas nécessairement les mêmes que chez l’adulte. En effet, les faibles niveaux d’anticonvulsivants et la polythérapie n’apparaissaient pas come des facteurs de risque chez l’enfant.
Discuter de MSISE peut entraîner de chauds débats. Une ancienne publication d’Épilepsie Canada avait provoqué une vague surprenante de réactions de la part des patients et médecins. La plupart des réactions étaient négatives mais pour des raisons distinctes. Un premier groupe, composé surtout de patients, était surpris de ne pas avoir été informé de cette condition. Le second groupe, composé de patients et médeciins, nous indiquait qu’il n’était pas nécessaire de publicisé cette condition rare et qui risque d’influencer négativement l’attitude des gens et des compagnies d’assurance envers les personnes atteintes d’épilepsie. Cependant, notre équipe et d’autres à travers le Canada ont reconnu le besoin de discuter du syndrome avec les patients, au moins ceux à risque. Nous croyons que le savoir est un avantage pour chacun et permet aux individus et à leur famille de pleinement profiter de la vie.
Notre organisation locale (Epilepsie Montreal Metropolitain) n’a pas aborder le sujet de façon officielle au cours de 10 dernières années à notre journée annuelle d’information. Encore une fois, l’impact négatif du sujet sur les patients et leur famille en font un sujet difficile d’aborder en groupe. Dans le futur, nous croyons qu’en informant mieux les patients et leur famille individuellement sur l’incidence de la MSISE, pourrait faciliter une discussion ouverte sur le sujet.
Lionel Carmant, President, Canadian League Against Epilepsy
Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.
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