背景:根据潜在的病因和癫痫类型,癫痫患者的疾病负担可能有很大差异。本分析旨在比较与癫痫相关的结节性硬化症(TSC)成人的直接和间接成本和生活质量(QoL)。特发性全身性癫痫(IGE),和德国的局灶性癫痫(FE)。
方法:对92例TSC合并癫痫患者的问卷进行年龄和性别匹配,在独立研究中收集的92例IGE患者和92例FE患者的反应。对主要QoL成分进行了比较,直接费用(患者就诊,药物使用,医疗设备,诊断程序,辅助治疗,和运输成本),间接成本(就业,减少工作时间,错过的日子),和护理水平成本。
结果:在所有三个队列中,平均直接总成本(TSC:7602欧元[中位数2620欧元];IGE:1919欧元[中位数446欧元],P<0.001;FE:2598欧元[中位数892欧元],P<0.001)和3个月内生产率损失导致的平均间接总成本(TSC:7185欧元[中位数11,925欧元];IGE:3599欧元[中位数0欧元],P<0.001;FE:5082欧元[中位数2981欧元],P=0.03)在TSC患者中最高。失业的TSC患者的比例(60%)明显大于IGE患者的比例(23%,P<0.001)或FE(34%,P=P<0.001)失业人员。5个维度和3个级别的EuroQuol量表的指数得分TSC患者(时间权衡[TTO]:0.705,视觉模拟量表[VAS]:0.577)明显低于IGE患者(TTO:0.897,VAS:0.813;P<0.001)或FE(TTO:0.879,VAS:0.769;P<0.001)。TSC患者修订后的癫痫病耻感量表评分(3.97)也显著高于IGE患者(1.48,P<0.001)或FE患者(2.45,P<0.001)。TSC(57.7)和FE(57.6)患者的癫痫总体生活质量量表-31项评分明显低于IGE患者(66.6,P=0.004)。在癫痫的神经障碍抑郁量表(TSC:13.1;IGE:11.2,P=0.009)和利物浦不良事件概况评分(TSC:42.7;IGE:37.5,P=0.017)中,TSC和IGE患者之间也存在显着差异,在两个问卷中,TSC患者的得分更高,结果更差。
结论:这项研究是第一个比较TSC患者,IGE,和德国的FE,并强调了TSC患者过重的QoL负担以及直接和间接成本负担。
BACKGROUND: Depending on the underlying etiology and epilepsy type, the burden of disease for patients with seizures can vary significantly. This analysis aimed to compare direct and indirect costs and quality of life (QoL) among adults with tuberous sclerosis complex (TSC) related with epilepsy, idiopathic generalized epilepsy (IGE), and focal epilepsy (FE) in Germany.
METHODS: Questionnaire responses from 92 patients with TSC and epilepsy were matched by age and gender, with responses from 92 patients with IGE and 92 patients with FE collected in independent studies. Comparisons were made across the main QoL components, direct costs (patient visits, medication usage, medical equipment, diagnostic procedures, ancillary treatments, and transport costs), indirect costs (employment, reduced working hours, missed days), and care level costs.
RESULTS: Across all three cohorts, mean total direct costs (TSC: €7602 [median €2620]; IGE: €1919 [median €446], P < 0.001; FE: €2598 [median €892], P < 0.001) and mean total indirect costs due to lost productivity over 3 months (TSC: €7185 [median €11,925]; IGE: €3599 [median €0], P < 0.001; FE: €5082 [median €2981], P = 0.03) were highest among patients with TSC. The proportion of patients with TSC who were unemployed (60%) was significantly larger than the proportions of patients with IGE (23%, P < 0.001) or FE (34%, P = P < 0.001) who were unemployed. Index scores for the EuroQuol Scale with 5 dimensions and 3 levels were significantly lower for patients with TSC (time-trade-off [TTO]: 0.705, visual analog scale [VAS]: 0.577) than for patients with IGE (TTO: 0.897, VAS: 0.813; P < 0.001) or FE (TTO: 0.879, VAS: 0.769; P < 0.001). Revised Epilepsy Stigma Scale scores were also significantly higher for patients with TSC (3.97) than for patients with IGE (1.48, P < 0.001) or FE (2.45, P < 0.001). Overall Quality of Life in Epilepsy Inventory-31 items scores was significantly lower among patients with TSC (57.7) and FE (57.6) than among patients with IGE (66.6, P = 0.004 in both comparisons). Significant differences between patients with TSC and IGE were also determined for Neurological Disorder Depression Inventory for Epilepsy (TSC: 13.1; IGE: 11.2, P = 0.009) and Liverpool Adverse Events Profile scores (TSC: 42.7; IGE: 37.5, P = 0.017) with higher score and worse results for TSC patients in both questionnaires.
CONCLUSIONS: This study is the first to compare patients with TSC, IGE, and FE in Germany and underlines the excessive QoL burden and both direct and indirect cost burdens experienced by patients with TSC.