OBJECTIVE This retrospective study examined patients with probable Lennox-Gastaut syndrome (LGS) identified from German healthcare data. METHODS This 10-year study (2007-2016) assessed healthcare insurance claims information from the Vilua Healthcare research database. A selection algorithm considering diagnoses and drug prescriptions identified patients with probable LGS. To increase the sensitivity of the identification algorithm, two populations were defined: all patients with probable LGS (broadly defined) and only those with a documented epilepsy diagnosis before 6 years of age (narrowly defined). This specific criterion was used as LGS typically has a peak seizure onset between age 3 and 5 years. Primary analyses were prevalence and demographics; secondary analyses included healthcare costs, hospitalization rate and length of stay (LOS), medication use, and mortality. RESULTS In the final year of the study, 545 patients with broadly defined probable LGS (mean [range] age: 31.4 [2-89] years; male: 53%) were identified. Using the narrowly defined probable LGS definition, the number of patients was reduced to 102 (mean [range] age: 7.4 [2-14] years; male: 52%). Prevalence of broadly defined and narrowly defined probable LGS was 39.2 and 6.5 per 100,000 people. During the 10-year study, 208 patients with narrowly defined probable LGS were identified and followed up for 1379 patient-years. The mean annual cost of healthcare was €22,787 per patient-year (PPY); greatest costs were attributable to inpatient care (33%), home nursing care (13%), and medication (10%). Mean annual healthcare costs were significantly greater for those with prescribed rescue medication (45% of patient-years) versus those without (€33,872 vs. €13,785 PPY, p < 0.001). Mean (standard deviation [SD]) annual hospitalization rate was 1.6 (2.0) PPY with mean (SD) annual LOS of 22.7 (46.0) days. Annual hospitalization rate was significantly greater in those who were prescribed rescue medication versus those who were not (2.2 [2.3] vs. 1.1 [1.6] PPY, p < 0.001). The mean (SD) number of different medications prescribed was 11.3 (7.3) PPY and 33.8 (17.0) over the entire observable time per patient (OET); antiepileptic drugs only accounted for 2.1 (1.1) of the medications prescribed PPY and 3.8 (2.0) OET. Over the 10-year study period, mortality in patients with narrowly defined probable LGS was significantly higher than the matched control population (six events [2.88%] vs. oneevent [0.01%], p < 0.001). CONCLUSION Annual healthcare costs incurred by patients with probable LGS in Germany were substantial, and mostly attributable to inpatient care, home nursing care, and medication. Patients prescribed with rescue medication incurred significantly greater costs than those who were not. Patients with narrowly defined probable LGS had a higher mortality rate versus control populations.

中文翻译：

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疑似 Lennox-Gastaut 综合征患者的流行病学、医疗资源使用和死亡率：基于人群的德国健康保险数据研究

目标这项回顾性研究检查了从德国医疗保健数据中确定的可能患有 Lennox-Gastaut 综合征 (LGS) 的患者。方法 这项为期 10 年的研究 (2007-2016) 评估了来自 Vilua Healthcare 研究数据库的医疗保险索赔信息。考虑诊断和药物处方的选择算法确定了可能患有 LGS 的患者。为了提高识别算法的敏感性，定义了两个人群：所有可能患有 LGS 的患者（广义定义）和仅那些在 6 岁之前确诊癫痫的患者（狭义定义）。之所以使用这一特定标准，是因为 LGS 通常在 3 至 5 岁之间出现癫痫发作高峰。主要分析是流行率和人口统计学；次要分析包括医疗费用、住院率和住院时间 (LOS)，药物使用和死亡率。结果 在研究的最后一年，确定了 545 名具有广泛定义的可能 LGS 的患者（平均 [范围] 年龄：31.4 [2-89] 岁；男性：53%）。使用狭义的可能 LGS 定义，患者数量减少到 102（平均 [范围] 年龄：7.4 [2-14] 岁；男性：52%）。广义和狭义的可能 LGS 的患病率分别为每 100,000 人 39.2 和 6.5。在为期 10 年的研究中，确定了 208 名狭义的疑似 LGS 患者，并对其进行了 1379 患者年的随访。医疗保健的平均年成本为每患者年 (PPY) 22,787 欧元；最大的成本归因于住院护理 (33%)、家庭护理 (13%) 和药物 (10%)。使用处方救援药物的患者（占患者年的 45%）与未使用处方药的患者（33,872 欧元 vs. 13,785 欧元，p < 0.001）相比，平均年度医疗保健费用显着更高。平均（标准差 [SD]）年住院率为 1.6 (2.0) PPY，平均 (SD) 年 LOS 为 22.7 (46.0) 天。开具急救药物的患者的年住院率明显高于未开具的患者（2.2 [2.3] 比 1.1 [1.6] PPY，p < 0.001）。在每位患者的整个可观察时间 (OET) 内，开出的不同药物的平均 (SD) 数为 11.3 (7.3) PPY 和 33.8 (17.0)；抗癫痫药物仅占 PPY 处方药物的 2.1 (1.1) 和 3.8 (2.0) OET。在10年的学习期间，狭义可能 LGS 患者的死亡率显着高于匹配的对照人群（6 个事件 [2.88%] 与一个事件 [0.01%]，p < 0.001）。结论 德国可能患有 LGS 的患者每年产生的医疗费用很高，主要归因于住院护理、家庭护理和药物治疗。开出急救药物的患者比没有开处方的患者花费大得多。与对照人群相比，狭义的疑似 LGS 患者的死亡率更高。开出急救药物的患者比没有开处方的患者花费大得多。与对照人群相比，狭义的疑似 LGS 患者的死亡率更高。开出急救药物的患者比没有开处方的患者花费大得多。与对照人群相比，狭义的疑似 LGS 患者的死亡率更高。