目的:在SUDEP前几周出现受试者可修改疾病的临床前数据报告,包括睡眠障碍和心肺变化;支持轶事临床数据的发现。这里,我们将临床前发现与未来的临床/临床前研究联系起来,并调查看护人或受害者的家庭成员是否注意到SUDEP之前的短暂变化。这项初步研究的目的是确定潜在的可修改的变化,这些变化可能会协同增加SUDEP的风险,以便将来进行研究。
方法:在SUDEP社区网站上发布了一项移动电子调查。调查询问缉获量是否发生变化,睡眠,身体健康,情感幸福,认知,呼吸,或在SUDEP之前注意到心率。
结果:最深刻的发现是,在SUDEP之前,有85%的受害者患有多种短暂疾病。缉获量的变化(28/54),和睡眠(30/58)发生在50%以上的受害者中,代表了确定的最具影响力的变化。第二和第三最具影响力的变化是身体健康(25/57)和情感幸福感(26/56)的下降。大约三分之一的病例在生命的最后两个月内观察到了变化,在大约三分之一的病例中,在SUDEP之前四个月以上,表明了主动预防策略的潜在时间框架。受访者还注意到认知的变化(16/55),呼吸(9/54)或心率(8/55)。数据表明这些变化可能与受试者体内SUDEP风险增加有关。研究的局限性包括反应是基于记忆,数据有可能被过度报道,并且没有提示看护人先验地观察变化,因此,一些现有的变化可能没有被注意到。
结论:数据支持临床前发现,亚临床(即,没有严重到需要医疗干预),可改变的疾病可能会增加SUDEP的风险。这表明,正如癫痫类型可以在一生中改变,癫痫类型特异性治疗可以降低SUDEP风险,SUDEP风险的进一步个性化将提高我们对变量是否在整个生命周期中对风险的贡献不同的理解。因此,具有动态的变化能力,在任何给定时间,不同的因素可能会导致个体内部风险概率的分布。了解不同的短暂变化组合是否特定于癫痫类型,年龄,或性别需要决心推动这一领域向前发展,以期制定个性化的预防策略。
OBJECTIVE: Preclinical data report within subject modifiable ailments emerge weeks prior to SUDEP, including sleep disorders and cardiorespiratory changes; findings which support anecdotal clinical data. Here, we bridge preclinical findings with future clinical/preclinical studies, and survey whether
caretakers or family members of victims noticed transient changes prior to SUDEP. The aim of this pilot study is to identify potential modifiable changes that may synergistically increase SUDEP risk for future research.
METHODS: A mobile electronic survey was posted on SUDEP community websites. The survey queried whether changes in seizures, sleep, physical well-being, emotional well-being, cognition, breathing, or heart rate were noticed before SUDEP.
RESULTS: The most profound finding was that 85% of victims had multiple transient ailments prior to SUDEP. Changes in seizures (28/54), and sleep (30/58) occurred in more than 50% of the victims and represent the most influential changes identified. The second and third most influential changes were a reduction in physical well-being (25/57) and emotional well-being (26/56). Changes were observed within the last two months of life in approximately one third of the cases, and more than four months prior to SUDEP in approximately one third of cases, indicating a potential time frame for proactive preventative strategies. Respondents also noted changes in cognition (16/55), breathing (9/54) or heart rate (8/55). Data indicate these changes may be associated with increased SUDEP risk within subject. Study limitations include the responses were based on memory, there was a potential for data to be over reported, and
caretakers were not prompted to observe changes a priori, thus some existing changes may have gone unnoticed.
CONCLUSIONS: Data support the preclinical findings that transient, subclinical (i.e., not severe enough to require medical intervention), modifiable ailments may increase risk of SUDEP. This suggests that just as an epilepsy type can change over a lifetime and epilepsy type-specific treatments can reduce SUDEP risk, further personalization of SUDEP risk will improve our understanding as to whether variables contribute to risk differently across lifespan. Thus, with a dynamic capacity to change, differing factors may contribute to the distribution of risk probability within an individual at any given time. Understanding whether different combinations of transient changes are specific to epilepsy type, age, or sex needs to be determined to move the field forward in hopes of developing a personalized approach to preventative strategies.