Health Economics and Policy Evaluation Research (HEPER) Group, Centre for Medicine Use and Safety, Monash University, Melbourne, Victoria, Australia.
School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
Epilepsia Open. 2024 Apr;9(2):739-749. doi: 10.1002/epi4.12919. Epub 2024 Feb 15.
Epilepsy is a common and serious neurological disorder. This cross-sectional analysis addresses the burden of epilepsy at different stages of the disease.
This pilot study is embedded within the Australian Epilepsy Project (AEP), aiming to provide epilepsy support through a national network of dedicated sites. For this analysis, adults aged 18-65 years with first unprovoked seizure (FUS), newly diagnosed epilepsy (NDE), or drug-resistant epilepsy (DRE) were recruited between February-August 2022. Baseline clinicodemographic data were collected from the participants who completed questionnaires to assess their quality of life (QOLIE-31, EQ-5D-5L), work productivity (Work Productivity and Activity Impairment [WPAI]), and care needs. Univariate analysis and multivariate regression was performed.
172 participants formed the study cohort (median age 34, interquartile range [IQR]: 26-45), comprising FUS (n = 44), NDE (n = 53), and DRE (n = 75). Mean QOLIE-31 score was 56 (standard deviation [SD] ± 18) and median EQ-5D-5L score was 0.77 (IQR: 0.56-0.92). QOLIE-31 but not EQ-5D-5L scores were significantly lower in the DRE group compared to FUS and NDE groups (p < 0.001). Overall, 64.5% of participants participated in paid work, with fewer DRE (52.0%) compared with FUS (76.7%) and NDE (72.5%) (p < 0.001). Compared to those not in paid employment, those in paid employment had significantly higher quality of life scores (p < 0.001). Almost 5.8% of participants required formal care (median 20 h/week, IQR: 12-55) and 17.7% required informal care (median 16 h/week, IQR: 7-101).
Epilepsy is associated with a large burden in terms of quality of life, productivity and care needs.
This is a pilot study from the Australian Epilepsy Project (AEP). It reports health economic data for adults of working age who live with epilepsy. It found that people with focal drug-resistant epilepsy had lower quality of life scores and were less likely to participate in paid employment compared to people with new diagnosis epilepsy. This study provides important local data regarding the burden of epilepsy and will help researchers in the future to measure the impact of the AEP on important personal and societal health economic outcomes.
癫痫是一种常见且严重的神经系统疾病。本横断面分析探讨了疾病不同阶段癫痫的负担。
本试点研究嵌入在澳大利亚癫痫项目（AEP）中，旨在通过专门的全国性网络为癫痫患者提供支持。在这项分析中，招募了年龄在 18-65 岁之间、有首次无诱因发作（FUS）、新诊断癫痫（NDE）或耐药性癫痫（DRE）的成年人。从完成问卷评估生活质量（QOLIE-31、EQ-5D-5L）、工作生产力（工作生产力和活动障碍[WPAI]）和护理需求的参与者中收集基线临床人口统计学数据。进行了单变量分析和多变量回归。
172 名参与者组成了研究队列（中位年龄 34 岁，四分位距[IQR]：26-45），包括 FUS（n=44）、NDE（n=53）和 DRE（n=75）。QOLIE-31 平均得分为 56（标准差[SD]±18），EQ-5D-5L 中位数得分为 0.77（IQR：0.56-0.92）。与 FUS 和 NDE 组相比，DRE 组的 QOLIE-31 评分显著较低（p<0.001），但 EQ-5D-5L 评分没有显著差异。总体而言，64.5%的参与者从事有报酬工作，DRE 组（52.0%）明显少于 FUS 组（76.7%）和 NDE 组（72.5%）（p<0.001）。与没有从事有报酬工作的参与者相比，从事有报酬工作的参与者生活质量评分显著更高（p<0.001）。近 5.8%的参与者需要正式护理（中位数 20 小时/周，IQR：12-55），17.7%需要非正式护理（中位数 16 小时/周，IQR：7-101）。
癫痫在生活质量、生产力和护理需求方面存在较大负担。
这是来自澳大利亚癫痫项目（AEP）的一项试点研究。它报告了成年癫痫患者的健康经济学数据。研究发现，与新诊断的癫痫患者相比，局灶性耐药性癫痫患者的生活质量评分较低，参与有报酬工作的可能性较低。这项研究提供了有关癫痫负担的重要本地数据，并将帮助未来的研究人员衡量 AEP 对个人和社会健康经济学重要结果的影响。
