OBJECTIVE Status epilepticus (SE) is a life-threatening neurological emergency with the potential for wide-ranging impact on patients and caregivers. In this study, the burden of disease in patients with a history of SE and their caregivers was assessed. METHODS Adult patients as well as caregivers of children, adolescents, and adults who had experienced ≥1 SE event in the past 24 months completed an online survey. Functional, social, emotional, and economic burden in patients and caregivers was assessed. Burden was measured through concept-targeted questionnaires, including the US Centers for Disease Control and Prevention (CDC) Health-Related Quality of Life 4 (HRQoL-4) and the Work Productivity and Activity Impairment (WPAI) instruments. RESULTS The 198 respondents comprised 49 adult patients, 51 caregivers of children, 47 caregivers of adolescents, and 51 caregivers of adults. Most patients (93.9%) were diagnosed with epilepsy. Patients' daily activities were highly affected, and many respondents reported a substantial long-term physical and mental impact on patients. The mean CDC HRQoL-4 score for unhealthy days per month ranged from 11.1 for caregivers of adults to 16.9 for caregivers of children. WPAI scores demonstrated a substantial impact on the ability of adult patients and all caregivers to work. Among respondents, caregivers of children reported the highest absenteeism from work (20%) and the lowest employment rate (33%). Proportions of caregivers reporting that their daily social life was impacted at least 'some of the time' ranged from 80% to 92%, with nearly half (47%) of caregivers of children responding that their social life was impacted 'all the time'. CONCLUSIONS Status epilepticus episodes place a high burden on patients and caregivers. Notably, the burden appeared high across a variety of domains. This study highlights that the burden of disease is pronounced and wide-reaching and goes beyond the immediate physical and medical impact of an SE episode.

中文翻译：

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有癫痫持续状态病史的患者及其护理人员的疾病负担

目的 癫痫持续状态 (SE) 是一种危及生命的神经急症，可能对患者和护理人员产生广泛影响。在这项研究中，评估了有 SE 病史的患者及其护理人员的疾病负担。方法 过去 24 个月内经历 ≥ 1 次 SE 事件的成年患者以及儿童、青少年和成人的照顾者完成了一项在线调查。评估了患者和护理人员的功能、社会、情感和经济负担。负担通过以概念为目标的问卷进行测量，包括美国疾病控制和预防中心 (CDC) 与健康相关的生活质量 4 (HRQoL-4) 和工作生产力和活动障碍 (WPAI) 工具。结果 198 名受访者包括 49 名成年患者、51 名儿童照顾者、47 名青少年看护人，51 名成年人看护人。大多数患者（93.9%）被诊断为癫痫。患者的日常活动受到很大影响，许多受访者表示对患者的身心产生了长期的实质性影响。CDC 每月不健康天数的平均 HRQoL-4 得分范围从成人看护者的 11.1 到儿童看护者的 16.9。WPAI 分数表明对成年患者和所有护理人员的工作能力有重大影响。在受访者中，照顾孩子的人的旷工率最高（20%），就业率最低（33%）。报告称他们的日常社交生活至少在“某些时候”受到影响的护理人员比例在 80% 到 92% 之间，近一半 (47%) 的儿童照顾者表示他们的社交生活“一直”受到影响。结论 癫痫持续状态发作给患者和护理人员带来了沉重的负担。值得注意的是，各种领域的负担似乎都很高。这项研究强调，疾病负担是显着且影响广泛的，超出了 SE 发作的直接身体和医学影响。