Hu Chunmei, Zhao Yuping, Xiao Zheng
Department of Neurology, The First Affiliated Hospital of Chongqing Medical University, NO.1 Youyi Rd., Chongqing, Yuzhong District, 400016, China.
Department of Neurology, The People's Hospital of Nanchuan, Chongqing, 408400, China.
Acta Epileptol. 2024 Apr 3;6(1):10. doi: 10.1186/s42494-024-00154-7.
This study was aimed to evaluate the stigma and quality of life (QoL) in adult patients with epilepsy (PWEs) and explore the relationship between stigma and QoL.
Two hundred and ninety-eight PWEs admitted to the Epilepsy Center of the First Affiliated Hospital of Chongqing Medical University during September 2020 and March 2021 were enrolled in this study. All participants completed self-reported questionnaires including the Stigma Scale for Epilepsy and the Quality of Life in Epilepsy Inventory-31 (QOLIE-31).
A total of 146 (49%) PWEs reported an experience of stigma. The total score of QOLIE-31 and the individual scores of seven subscales (worry about new seizures, emotion, well-being, energy and fatigue, cognitive impairment, medication effect, and social function) were significantly decreased in these patients (P < 0.001). Multivariate stepwise linear regression analysis showed that the annual household income per capita, the number of antiseizure medications and stigma had statistically significant effects on QoL (P < 0.05). Among them, stigma had the most significant negative effect.
Nearly half of PWEs have experienced stigma. Stigma, lower household income per capita, and polypharmacy treatment are associated with poorer QoL. Stigma has the most obvious negative impact.
本研究旨在评估成年癫痫患者(PWEs)的耻辱感和生活质量(QoL),并探讨耻辱感与生活质量之间的关系。
选取2020年9月至2021年3月期间在重庆医科大学附属第一医院癫痫中心住院的298例PWEs纳入本研究。所有参与者均完成了自我报告问卷,包括癫痫耻辱感量表和癫痫生活质量量表-31(QOLIE-31)。
共有146例(49%)PWEs报告有耻辱感经历。这些患者的QOLIE-31总分及七个子量表(担心新发作、情绪、幸福感、精力和疲劳、认知障碍、药物疗效及社会功能)的单项得分均显著降低(P<0.001)。多因素逐步线性回归分析显示,人均家庭年收入、抗癫痫药物数量及耻辱感对生活质量有统计学显著影响(P<0.05)。其中,耻辱感的负面影响最为显著。
近半数PWEs有耻辱感经历。耻辱感、较低的人均家庭收入及多药治疗与较差的生活质量相关。耻辱感的负面影响最为明显。