Epilepsy mortality

  • 文章类型: Journal Article
    目的:尚未对癫痫死亡率的长期趋势进行分析,这对于估计癫痫的未来负担至关重要。因此,我们旨在调查1979年至2021年美国癫痫死亡率的长期趋势。
    方法:死因和人口统计数据来自美国国家卫生统计中心(1979-2021),人口估计来自美国人口普查局。我们使用连接点回归模型分析了1979年至2021年癫痫死亡率的长期趋势。根据2000年美国人口数据评估了年龄调整后的癫痫死亡率,按年龄分层,性别,和种族。
    结果:年龄调整后的癫痫死亡率从1979年的每100,000人0.78增加到2021年的每100,000人1.01,平均年变化百分比(AAPC)为0.58%(95%置信区间[CI]:0.45%-0.72%)。2011年至2021年期间,癫痫的总体年龄调整后死亡率一直在上升。死亡率通常随年龄增长而增加。非洲裔美国人和男性的癫痫死亡率较高。两性癫痫的死亡率先下降后上升,AAPC1.02%(95%CI:0.88%,女性1.23%)和0.10%(95%CI:-0.002%,0.21%)在男性中。包括怀特在内的所有种族的死亡率,美国黑人,和其他种族个人先下降,然后上升。白人死亡率的AAPC,其他种族,美国黑人为0.89%(95%CI:0.79%,1.02%),-0.87%(95%CI:-1.84%,0.88%),和-0.31%(95%CI:-0.48%,-0.13%),分别。
    结论:尽管癫痫死亡率经历了一段时间的下降,值得注意的是,在过去的十年中,增长迅速。对癫痫死亡率的长期趋势进行全面评估对于确定医疗保健优先级具有重要意义。
    OBJECTIVE: The analysis of long-term trends of mortality from epilepsy has not been conducted, which is crucial for estimating the future burden of epilepsy. We therefore aimed to investigate the long-term trends of mortality from epilepsy in the United States from 1979 to 2021.
    METHODS: The cause-of-death and demographic data were from the National Center for Health Statistics (1979-2021) and population estimates were from the US Census Bureau. We used the joinpoint regression model to analyze secular trends in the mortality of epilepsy spanning from 1979 to 2021. Age-adjusted mortality from epilepsy was assessed based on the year 2000 U.S. population data, stratified by age, sex, and race.
    RESULTS: The age-adjusted mortality from epilepsy increased from 0.78 per 100,000 population in 1979 to 1.01 per 100,000 population in 2021, with an average annual percent change (AAPC) of 0.58% (95% confidence interval [CI]: 0.45% - 0.72%). The overall age-adjusted mortality of epilepsy had been on the rise between 2011 and 2021. The mortality rate generally increases with age. The mortality of epilepsy was higher in the Afro-American people and men. The mortality of epilepsy in both sexes declined first and then increased, with AAPC 1.02% (95% CI: 0.88%, 1.23%) in women and 0.10% (95% CI: -0.002%, 0.21%) in men. Mortality in all races including White, Afro-American people, and other races individuals fell first and then rose. The AAPC of mortality in White, other races, and Afro-American people were 0.89% (95% CI: 0.79%, 1.02%), -0.87% (95% CI: -1.84%, 0.88%), and -0.31% (95% CI: -0.48%, -0.13%), respectively.
    CONCLUSIONS: Although the mortality rate from epilepsy has experienced a period of decline, it is worth noting that the last decade has seen a rapid increase. A comprehensive assessment of long-term trends in mortality from epilepsy holds significance for healthcare prioritization.
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  • 文章类型: Journal Article
    目的:癫痫突然意外死亡(SUDEP)是癫痫死亡的主要原因。所有国际指南都强烈主张与癫痫患者(PWE)合作的临床医生讨论SUDEP。比较了在英国和挪威与PWE合作进行SUDEP咨询的临床医生观点。
    方法:在英国国际抗癫痫/癫痫专科护士协会和挪威国际抗癫痫/癫痫联盟中,使用非歧视性的指数滚雪球技术,对17个Likert和自由文本回答问题进行了横断面在线混合方法调查。使用描述性统计和Mann-Whitney,Kruskal-Wallis,卡方检验和费舍尔精确检验。在p<0.05时接受显著性。对自由文本答复进行了专题分析。
    结果:对309(英国197,挪威112)的答复,英国临床医生更有可能经历过SUDEP(p<0.001),更加重视SUDEP通信(p<0.001),讨论SUDEP与所有PWE特别是新患者(p<0.001),获得并参考丧亲支持(p<0.001),并且不太可能从不讨论SUDEP(p<0.001)。在SUDEP咨询方面,这两个国家的神经科医师和护士之间存在显着差异,英国临床医生通常更支持。英国响应者更有可能确定丧亲支持(p<0.001)。专题分析强调了四个共同的主题和两个针对挪威人的主题。
    结论:尽管所有国际准则都指出与所有PWE讨论SUDEP的必要性/重要性仍然犹豫不决,具有SUDEP相关对话的临床医生的回避和主观性,挪威比英国更多。需要培训和教育来改善沟通,参与和决策。
    OBJECTIVE: Sudden unexpected death in epilepsy (SUDEP) is a leading cause of epilepsy mortality. All international guidance strongly advocates for clinicians working with people with epilepsy (PWE) to discuss SUDEP. Clinician views working with PWE in the UK and Norway on SUDEP counselling are compared.
    METHODS: A cross-sectional online mixed methodology survey of 17 Likert and free-text response questions using validated themes was circulated via International League against Epilepsy/Epilepsy Specialist Nurses Association in the UK and International League against Epilepsy/Epilepsinet in Norway using a non-discriminatory exponential snowballing technique leading to non-probability sampling. Quantitative data were analysed using descriptive statistics and Mann-Whitney, Kruskal-Wallis, chi-squared and Fisher\'s exact tests. Significance was accepted at p < 0.05. Thematic analysis was conducted on free-text responses.
    RESULTS: Of 309 (UK 197, Norway 112) responses, UK clinicians were more likely to have experienced an SUDEP (p < 0.001), put greater importance on SUDEP communication (p < 0.001), discuss SUDEP with all PWE particularly new patients (p < 0.001), have access and refer to bereavement support (p < 0.001) and were less likely to never discuss SUDEP (p < 0.001). Significant differences existed between both countries\' neurologists and nurses in SUDEP counselling with UK clinicians generally being more supportive. UK responders were more likely to be able to identify bereavement support (p < 0.001). Thematic analysis highlighted four shared themes and two specific to Norwegians.
    CONCLUSIONS: Despite all international guidelines stating the need/importance to discuss SUDEP with all PWE there remain hesitation, avoidance and subjectivity in clinicians having SUDEP-related conversations, more so in Norway than the UK. Training and education are required to improve communication, engagement and decision making.
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  • 文章类型: Journal Article
    癫痫与死亡率增加有关。心血管疾病赋予了这种风险增加的很大一部分。最近,人们对癫痫患者心血管死亡率的负担越来越感兴趣。这篇综述讨论了最常见的心血管危险因素及其与癫痫的关系,包括肥胖。糖尿病,和高脂血症。还讨论了与使用酶诱导抗癫痫药物有关的高脂血症,这对患有心血管疾病风险和癫痫的患者的处方者特别重要。讨论了心率变异性(HRV)及其与SUDEP的关联,以及血管风险的原因。最后,作者讨论了治疗癫痫的神经科医生使用可用的工具,如ASCVD评分计算器,以确定总体死亡风险,与患者的心血管危险因素更紧密地接触的潜在作用。以及根据这些信息指导治疗方法,整合本综述中提供的信息。
    Epilepsy is associated with increased mortality. Cardiovascular disease confers a significant portion of this increased risk. Recently there is increased interest in the burden of cardiovascular mortality in people with epilepsy. This review discusses the most common cardiovascular risk factors and their association with epilepsy including obesity, diabetes mellitus, and hyperlipidemia. Hyperlipidemia related to the use of enzyme inducing anti-seizure medications is also discussed as a topic that is of particular importance to prescribers that have patients with comorbid cardiovascular risk and epilepsy. Heart rate variability (HRV) and its association with SUDEP is discussed as well as a contributor to vascular risk. Finally, the authors discuss a potential role for neurologists who treat epilepsy to engage closer with their patient\'s cardiovascular risk factors using available tools such as a the ASCVD score calculator to determine the overall risk of mortality, as well as acting upon this information to guide treatment approaches integrating the information provided in this review.
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  • 文章类型: Journal Article
    目的:本研究旨在描述拉丁美洲(LA)儿童和青少年癫痫患者的儿科神经科医师(PNs)的特征,并向他们传达癫痫突然意外死亡(SUDEP)的风险。
    方法:个人数据和与家庭讨论SUDEP的细节,包括SUDEP披露的相关性,这种通信的频率,感知的收益和披露的风险,就此类披露接受的培训程度,和SUDEP的专业经验,是通过对洛杉矶PN的在线调查收集的。他们进行这次谈话的个人经验是通过回答一个悬而未决的问题获得的,进一步用于识别主要障碍。
    结果:在收到的442份调查中,367(83%)进行了分析。大多数参与者(73.8%)回答SUDEP风险的沟通是相关的或非常相关的;然而,只有17.9%的人报告说总是或非常频繁地交流。增加SUDEP沟通频率的因素包括复杂性水平较高的患者(OR=2.18,P=.003)和医师对SUDEP的个人经验(OR=2.305,P<.001)。来自家庭的直接问题和避免吓them他们一个罕见的结果是讨论和不讨论SUDEP背后的主要动机,分别。在公开的问题中,受访者认为对患者理解信息的能力和文化差距的担忧是障碍。“了解改善治疗依从性的意图”和“建立移情关系”显着相关。Further,“不要害怕”的概念与“讨论SUDEP的个人困难”密切相关。\"
    结论:尽管大多数PN都同意有关SUDEP的沟通是相关的,只有少数人真正参与其中。与会者认为,缺乏这种交流方面的适当培训是一个障碍。更好地理解沟通的期望,卫生专业人员的教育,和通信技术在缩小准则和实践之间的差距方面具有很强的相关性。
    OBJECTIVE: This study aimed to describe the characteristics of pediatric neurologists (PNs) in Latin America (LA) who attend to children and adolescents with epilepsy and convey to them the risk of sudden unexpected death in epilepsy (SUDEP).
    METHODS: Personal data and details of discussion of SUDEP with families, including relevance of SUDEP disclosure, frequency of such communication, perceived benefits and risks of disclosure, extent of training received on such disclosure, and professional experience with SUDEP, were collected through an online survey of PNs from LA. Their personal experience in carrying out this conversation was obtained through responses to an open question, further used to identify the main barriers.
    RESULTS: Of the 442 surveys received, 367 (83%) were analyzed. Most participants (73.8%) responded that the communication of SUDEP risk was relevant or very relevant; however, only 17.9% reported communicating it always or very frequently. Factors that increased the frequency of SUDEP communication included patients with higher levels of complexity (OR = 2.18, P = .003) and the physician\'s personal experience with SUDEP (OR = 2.305, P < .001). Direct questions from the family and avoiding scaring them about a rare outcome were the main motivations behind discussing and not discussing SUDEP, respectively. In the open question, respondents identified worries about the patient\'s ability to understand the information and cultural gaps as barriers. \"Informing with the intention of improving adherence to treatment\" and \"establishing an empathic relationship\" were significantly related. Further, the concept of \"do not scare\" was significantly related to \"personal difficulties in discussing SUDEP.\"
    CONCLUSIONS: Although most PNs agree that communication about SUDEP is relevant, only a minority actually engages in it. Participants identified a lack of appropriate training in such communication as a barrier. A better understanding of communication expectations, education of health professionals, and communication techniques have a strong relevance in diminishing the gap between guidelines and practice.
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  • 文章类型: Journal Article
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  • 文章类型: Editorial
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  • 文章类型: Journal Article
    Excess mortality due to epilepsy is greatest among young adults. However, the relative proportions of sudden unexpected death in epilepsy (SUDEP) and other epilepsy-related causes of death are not well defined. We prospectively adjudicated cause of death in all 18- to 45-year-olds with a history of seizure/epilepsy who underwent medicolegal investigation in San Diego County between 2014 and 2017. We identified 108 decedents with definite or probable epilepsy; 62% died from an epilepsy-related cause. SUDEP accounted for 42.6% (N = 46) of deaths, which were usually unwitnessed deaths, at home in bed. Other frequent causes of death were drug overdose (N = 23), suicide (N = 8), trauma (N = 8), and drowning (N = 6). SUDEP autopsies were similar to those of decedents from other causes. Most deaths in young adults with epilepsy that undergo medico-legal investigation are epilepsy-related, and SUDEP is the leading cause. Improved seizure control can potentially save many lives.
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  • 文章类型: Journal Article
    OBJECTIVE: People with epilepsy have an increased risk of mortality when compared to the general population. Sudden unexpected death in epilepsy (SUDEP) is the most common cause of epilepsy-related death in children and adults. The purpose of this review is to discuss SUDEP, with an emphasis on SUDEP risk factors, their mitigation and prevention.
    RESULTS: SUDEP affects approximately 1 in 1000 people with epilepsy each year. Recent studies suggest that the incidence in children is similar to that of adults. The most important risk factor for SUDEP is the presence and frequency of generalized tonic-clonic seizures. The presence of nocturnal supervision may decrease risk along with the use of nocturnal listening devices. Underlying genetic influences, both cardiac and epilepsy-related may further alter risk. Risk mitigation strategies include reducing seizure frequency, optimizing therapy, and the use of nocturnal supervision/seizure detection devices. Risk factors for SUDEP are well established; however, pediatric specific risk factors have not been identified. Current prevention strategies are focused on reduction of risk factors and the possible role of seizure detection devices. More research is needed to better understand the varied underlying pathological mechanisms and develop targeted prevention strategies. Further understanding the genetic factors that influence SUDEP risk may potentially aid in understanding the underlying pathophysiology of SUDEP.
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  • 文章类型: Case Reports
    Sudden Unexpected Death in Epilepsy (SUDEP) is a significant cause of death in childhood epilepsy, and causes considerable concern to patients and their families. Despite this, the condition remains poorly understood. This systematic review investigates the risk factors, pathophysiology, and circumstances associated with childhood SUDEP. It aimed to explore the etiology of SUDEP and inform clinicians approaching SUDEP risk disclosure.
    A structured electronic database search of MEDLINE, CENTRAL, EMBASE, and ISI web of science was conducted. Studies were included if they described clinical details of one or more patients, aged 18 years of age and below, who had SUDEP. Two reviewers independently reviewed each article for data extraction and quality assessment.
    Information on 108 cases of pediatric SUDEP was extracted from 22 included studies. These comprised five cohort studies, four retrospective case control studies, seven case series, and five case reports. Factors that appeared to be linked to pediatric SUDEP included those associated with severe epilepsy (early age of onset, high seizure frequency, intellectual impairment and developmental delay, multiple antiepileptic drug therapy, and structural abnormalities). The majority of included studies was noncomparative and had significant risk of bias.
    There is currently insufficient evidence to determine the etiology of pediatric SUDEP. Current best practice to prevent pediatric SUDEP is to optimize the management of epilepsy. A national SUDEP registry would provide invaluable high-quality data and insights into modifiable risk factors, genetic predispositions, and novel prevention strategies.
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