家长认为有必要讨论癫痫猝死问题

圣迭戈——根据加拿大麦克马斯特大学研究者的调查结果，家长希望了解癫痫造成的罕见患儿死亡。

Rajesh RamachandranNair博士

首席研究者、儿童神经科和癫痫病专家Rajesh RamachandranNair博士在美国癫痫学会年会上指出，长久以来，对于是否告知家长癫痫患儿无法解释的猝死风险(SUDEP)，一直存在争议。这种事件非常罕见，每10,000患者-年仅发生2~4例，所以临床医生通常隐瞒这种信息，以免造成家长的不必要困扰。

但调查结果证实家长希望了解这一信息。在对21例轻至重度癫痫患儿的36名家长(15名男性和21名女性)的小组面谈，和对死于这种情况的患儿的6名家长(2名男性和4名女性)的一对一面谈中，家长一致表示“希望了解SUDEP”。

调查结果显示：半数家长希望在诊断癫痫时了解SUDEP。其他家长认为，在第一次访视时需要了解的信息已经很多，所以他们希望在第一次随访时了解关于SUDEP的信息。

告知关于SUDEP的信息是有益的。难治性癫痫、年轻成人和男性为SUDEP的危险因素；家长和年轻成人患者了解到癫痫可能导致死亡，尤其是在有以上危险因素的人群中，可能提高治疗依从性。家长也可能在诊断癫痫后到互联网上搜索，当发现关于SUDEP的信息后，可能过高估计这种风险。在此情况下告知这种事件非常罕见可以减轻其困扰。

在本项研究中，26名(62%)家长知道SUDEP，并过高估计其风险。他们强调，不希望从小册子或互联网上首次了解SUDEP，而希望通过与儿童神经科医生进行面对面的谈话获知。他们还希望能在随访中与护士或社工讨论SUDEP，获得有可靠网络参照的书面信息。家长还希望了解宜何时告知患儿这种风险。总体上，最好在门诊机构告知关于SUDEP的信息。

RamachandranNair博士披露无相关利益冲突。

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By: M. ALEXANDER OTTO, Clinical Neurology News Digital Network

SAN DIEGO – Parents want to know that epilepsy can rarely prove fatal to children who have the condition, according to researchers from McMaster University in Hamilton, Ont.

It’s long been debated whether to tell parents of the risk of sudden unexplained death in epilepsy (SUDEP). It’s so rare – perhaps 2-4 cases per 10,000 patient-years in children – that clinicians often hold off sharing the information for fear of needlessly upsetting parents, said lead investigator Dr. Rajesh RamachandranNair.
 
It turns out that parents do want to know. During focus group interviews of 36 parents (15 men and 21 women) of 21 children with mild to severe epilepsy, and one-on-one interviews with 6 parents (2 men and 4 women) who lost 4 children to the condition, parents agreed "unanimously that they wanted to hear about SUDEP," said Dr. RamachandranNair, a pediatric neurologist and epileptologist at McMaster.

"Half of them wanted to know about SUDEP at the diagnosis of epilepsy. The rest thought that there’s a lot of information already at the first visit, so they wanted to hear about SUDEP at the first follow-up visit," he said.

There’s a benefit to telling them. Intractable epilepsy, young adulthood, and male gender are risk factors; awareness among parents – and young adults – that epilepsy can be fatal, especially in those groups, may lead to better treatment compliance, Dr. RamachandranNair said at the annual meeting of the American Epilepsy Society.

Parents are also likely to search the Internet after epilepsy is diagnosed, find out about SUDEP, and overestimate the risk. News that it’s a rare and unlikely occurrence will bring relief, he said.

In his study, 26 (62%) parents had heard about SUDEP and overestimated the risk. They "were emphatic" that they didn’t want to first hear about SUDEP from a pamphlet or an Internet website, but from face-to-face talks with a pediatric neurologist able to answer their questions.

They also wanted to be able to discuss SUDEP with nurses or social workers during follow-up visits, and have written information with credible Web references. Parents also wanted the decision of when to tell their child about the possibility left up to them.

In general, it’s best to bring up SUDEP in the outpatient setting. In the back of every parent’s mind is the possibility that their child might die during a seizure. They’ll probably reveal that concern with subtle clues; they might cry in the exam room or ask if their child will swallow their tongue during a seizure. That’s the time to probe further, and share the true risk of dying from a seizure, he said.

Dr. RamachandranNair said he had no relevant financial disclosures.