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Abstract：
OBJECTIVE: Lead time to treatment (clinical onset of epileptic spasms [ES] to initiation of appropriate treatment) is known to predict outcomes in infantile epileptic spasms syndrome (IESS). Timing the clinical onset of ES is crucial to establish lead time. We investigated how often ES onset could be established to the nearest week. We aimed to (1) ascertain the exact date or estimate the nearest week of ES onset and (2) compare clinical/demographic factors between patients where date of ES onset was determined or estimated to the nearest week and patients whose date of ES onset could not be estimated to the nearest week. Reasons for difficulties in estimating date of ES onset were explored.
METHODS: Retrospective chart review of new onset IESS patients (January 2019-May 2022) extracted the date or week of the clinical onset of ES. Predictors of difficulty in date of ES onset estimation to the nearest week were examined by regression analysis. Sources contributing to difficulties determining date of ES onset were assessed after grouping into categories (provider-, caregiver-, disease-related).
RESULTS: Among 100 patients, date of ES onset was estimated to the nearest week in 47%. On univariable analysis, age at diagnosis (p = .021), development delay (p = .007), developmental regression/stagnation (p = .021), ES intermixed with other seizures (p = .011), and nonclustered ES at onset (p = .005) were associated with difficulties estimating date of ES onset. On multivariable analysis, failure to establish date of ES onset was related to ES intermixed with other seizures (p = .004) and nonclustered ES at onset (p = .003). Sources contributing to difficulties determining date of ES onset included disease-related factors (ES characteristics, challenges interpreting electroencephalograms) and provider/caregiver-related factors (delayed diagnosis).
CONCLUSIONS: Difficulties with estimation of lead time (due to difficulties timing ES onset) can impact clinical care (prognostication), as even small increments in lead time duration can have adverse developmental consequences.
METHODS: Retrospective chart review of new onset IESS patients (January 2019-May 2022) extracted the date or week of the clinical onset of ES. Predictors of difficulty in date of ES onset estimation to the nearest week were examined by regression analysis. Sources contributing to difficulties determining date of ES onset were assessed after grouping into categories (provider-, caregiver-, disease-related).
RESULTS: Among 100 patients, date of ES onset was estimated to the nearest week in 47%. On univariable analysis, age at diagnosis (p = .021), development delay (p = .007), developmental regression/stagnation (p = .021), ES intermixed with other seizures (p = .011), and nonclustered ES at onset (p = .005) were associated with difficulties estimating date of ES onset. On multivariable analysis, failure to establish date of ES onset was related to ES intermixed with other seizures (p = .004) and nonclustered ES at onset (p = .003). Sources contributing to difficulties determining date of ES onset included disease-related factors (ES characteristics, challenges interpreting electroencephalograms) and provider/caregiver-related factors (delayed diagnosis).
CONCLUSIONS: Difficulties with estimation of lead time (due to difficulties timing ES onset) can impact clinical care (prognostication), as even small increments in lead time duration can have adverse developmental consequences.
摘要：
目的：已知治疗前时间（癫痫性痉挛的临床发作[ES]至开始适当治疗）可预测婴儿癫痫性痉挛综合征（IESS）的结局。ES的临床发作时机对于建立提前期至关重要。我们调查了ES发作到最近一周的频率。我们的目的是(1)确定ES发病的确切日期或估计最近的一周；(2)比较确定或估计ES发病日期为最近一周的患者和不能估计ES发病日期为最近一周的患者之间的临床/人口统计学因素。探讨了估计ES发病日期困难的原因。
方法：新发病IESS患者（2019年1月至2022年5月）的回顾性图表回顾提取了ES临床发病的日期或星期。通过回归分析检查了ES发病日期估计到最近一周的困难预测因素。在分组后，对导致确定ES发病日期困难的来源进行了评估(提供者-，看护人-,疾病相关)。
结果：在100名患者中，47%的人估计ES发病日期为最近的一周。关于单变量分析，诊断年龄（p=.021），开发延迟(p=.007)，发育回归/停滞（p=.021），ES与其他癫痫发作混合（p=.011），发病时的非聚集性ES（p=0.005）与估计ES发病日期的困难有关。在多变量分析中，未能确定ES发病日期与ES与其他癫痫发作混合(p=.004)和发病时的非聚集性ES(p=.003)相关.导致确定ES发病日期困难的来源包括疾病相关因素(ES特征，挑战解释脑电图)和提供者/护理人员相关因素(延迟诊断)。
结论：估计提前期的困难（由于ES发病时间安排困难）会影响临床护理（预后），因为即使提前期持续时间的微小增量也会产生不利的发育后果。
方法：新发病IESS患者（2019年1月至2022年5月）的回顾性图表回顾提取了ES临床发病的日期或星期。通过回归分析检查了ES发病日期估计到最近一周的困难预测因素。在分组后，对导致确定ES发病日期困难的来源进行了评估(提供者-，看护人-,疾病相关)。
结果：在100名患者中，47%的人估计ES发病日期为最近的一周。关于单变量分析，诊断年龄（p=.021），开发延迟(p=.007)，发育回归/停滞（p=.021），ES与其他癫痫发作混合（p=.011），发病时的非聚集性ES（p=0.005）与估计ES发病日期的困难有关。在多变量分析中，未能确定ES发病日期与ES与其他癫痫发作混合(p=.004)和发病时的非聚集性ES(p=.003)相关.导致确定ES发病日期困难的来源包括疾病相关因素(ES特征，挑战解释脑电图)和提供者/护理人员相关因素(延迟诊断)。
结论：估计提前期的困难（由于ES发病时间安排困难）会影响临床护理（预后），因为即使提前期持续时间的微小增量也会产生不利的发育后果。
