Department of Neurology, Emory University School of Medicine, Atlanta, GA, USA.
Department of Neurology, Emory University School of Medicine, Atlanta, GA, USA.
Seizure. 2020 Oct;81:13-17. doi: 10.1016/j.seizure.2020.07.007. Epub 2020 Jul 10.
Caregiver burden in psychogenic non-epileptic seizures (PNES) is an important but understudied reality. The objective of this exploratory study was to quantify caregiver burden in PNES and to identify the patient and caregiver characteristics associated with it.
PNES patients and their identified caregivers completed surveys about demographic, disease related and psychosocial characteristics during their Epilepsy Monitoring Unit (EMU) admission. Associations were evaluated using the Zarit Caregiver Burden Inventory (ZCBI) score as an independent variable and the patient and caregiver related characteristics as dependent variables.
43 patients and 28 caregivers were recruited. The patients were on average 36 years old, single women, unemployed, with some college education. They suffered from PNES on average for 8 years, having approximately 20 seizures per month, and were previously maintained on ≥ 2 antiseizure medications. Most caregivers were first degree relatives with a mean age of 43 years, married employed women of higher educational attainment, typically cohabitating with the patients. Caregiver burden was within the mild-moderate range (ZCBI mean score 28). The burden appeared higher in caregivers of male patients. Patient quality of life, depression and medication side effects were associated with that burden. Additionally, caregiver stigma, depression and anxiety emerged as potential contributors. In the multivariate analysis, patient quality of life and caregiver depression stood out as the most robust factors.
There is substantial caregiver burden in PNES. It is associated with both the patient and the caregiver psychosocial well-being in a reciprocal relationship.
照顾者负担是癔症性非癫痫发作（PNES）中的一个重要但研究不足的问题。本探索性研究的目的是量化 PNES 患者的照顾者负担，并确定与之相关的患者和照顾者特征。
在癫痫监测单元（EMU）住院期间，PNES 患者及其指定的照顾者完成了有关人口统计学、疾病相关和社会心理特征的调查。使用 Zarit 照顾者负担量表（ZCBI）评分作为自变量，患者和照顾者相关特征作为因变量来评估相关性。
共招募了 43 名患者和 28 名照顾者。患者平均年龄为 36 岁，单身女性，失业，具有一些大学学历。他们平均患有 PNES 8 年，每月发作约 20 次，之前维持使用≥2 种抗癫痫药物。大多数照顾者是一级亲属，平均年龄为 43 岁，已婚、有工作、受教育程度较高的女性，通常与患者同住。照顾者的负担处于轻度至中度范围（ZCBI 平均评分 28）。男性患者的照顾者负担较高。患者的生活质量、抑郁和药物副作用与负担有关。此外，照顾者耻辱感、抑郁和焦虑也可能是潜在的影响因素。在多变量分析中，患者的生活质量和照顾者的抑郁是最显著的因素。
PNES 患者存在大量的照顾者负担，这与患者和照顾者的心理社会健康相互关联。
