Luna Jaime, Nizard Mandy, Becker Danielle, Gerard Daniel, Cruz Alejandro, Ratsimbazafy Voa, Dumas Michel, Cruz Marcelo, Preux Pierre-Marie
Ecuadorian Academy of Neuroscience, Quito, Ecuador; INSERM, U1094, Tropical Neuroepidemiology, Limoges, France; Univ. Limoges, UMR-S 1094, Tropical Neuroepidemiology, Institute of Neuroepidemiology and Tropical Neurology, CNRS FR 3503 GEIST, F-87000 Limoges, France.
INSERM, U1094, Tropical Neuroepidemiology, Limoges, France; Univ. Limoges, UMR-S 1094, Tropical Neuroepidemiology, Institute of Neuroepidemiology and Tropical Neurology, CNRS FR 3503 GEIST, F-87000 Limoges, France.
Epilepsy Behav. 2017 Mar;68:71-77. doi: 10.1016/j.yebeh.2016.12.026. Epub 2017 Jan 19.
Epilepsy is felt to be a stigmatizing condition. Stigma has been considered one of the major factors contributing to the burden of epilepsy and to the treatment gap. Stigma has a negative effect on the management of people with epilepsy (PWE). Furthermore, lack of information and inappropriate beliefs are still the factors that most contribute to stigma and discrimination. In this study, we assessed the level of perceived stigma in urban and rural areas and we report their association with in antiepileptic drug (AED) use, effects on seeking medical care, and stigma-associated factors.
A cross-sectional study in urban and rural areas in Ecuador from January 2015 until May 2016. People with a confirmed diagnosis of epilepsy were included using three sources of information. The survey was implemented through a questionnaire to determine perceived stigma and evaluate the factors associated. The perceived stigma was measured using the revised Jacoby's stigma scale to detect differences in levels of stigmatization. Access to treatment was evaluated through self-report of AED use, and attainment of medical care and stigma-associated factors were assessed. Furthermore, a multivariate analysis adjusted for possible confounders was performed using stigma as the outcome variable.
A total of 243 PWE were interviewed, 65.8% reported feeling stigmatized and 39.1% reported a high stigmatized level. We found a significant difference in high stigma perception in the urban area compared to the rural area. However, the lack of use of AEDs was significantly higher in the rural areas. No significant correlation was found between use of AEDs and the levels of perceived stigma. PWE who did not talk about their condition and those who did not feel well informed about their epilepsy had significantly higher perceived stigma levels. Additionally, the multivariate analysis demonstrated that area, educational level, type of seizure, talk about epilepsy, and information were associated with perceived stigma.
The stigma perception was relevant in all PWE. We found a higher stigma level perception in the urban compared to rural area. Moreover, the lack of treatment was a serious problem mainly in rural areas. Even though we did not find that perceived stigma was associated with AED use, our study pointed out the influence of educational level and information related to stigmatization. Consequently, a coordinated effort to reduce stigma should include strategies focused on PWE education and information about their condition.
癫痫被认为是一种存在污名化的病症。污名已被视为导致癫痫负担和治疗差距的主要因素之一。污名对癫痫患者（PWE）的治疗产生负面影响。此外，信息缺乏和不恰当的观念仍是导致污名和歧视的最主要因素。在本研究中，我们评估了城乡地区对污名的感知程度，并报告了其与抗癫痫药物（AED）使用、就医影响以及污名相关因素的关联。
2015年1月至2016年5月在厄瓜多尔城乡地区开展的一项横断面研究。利用三种信息来源纳入确诊为癫痫的患者。通过问卷调查来实施该研究，以确定感知到的污名并评估相关因素。使用修订后的雅各比污名量表来测量感知到的污名，以检测污名化程度的差异。通过自我报告AED的使用情况来评估治疗可及性，并评估就医情况和污名相关因素。此外，以污名为结果变量，对可能的混杂因素进行多变量分析。
共采访了243名癫痫患者，65.8%的人报告感觉受到污名化，39.1%的人报告污名化程度较高。我们发现城市地区较高污名感知与农村地区相比存在显著差异。然而，农村地区未使用AED的比例明显更高。未发现AED的使用与感知到的污名程度之间存在显著相关性。未谈论自己病情的癫痫患者以及那些对自己的癫痫了解不足的患者，其感知到的污名程度明显更高。此外，多变量分析表明，地区、教育水平、发作类型、谈论癫痫以及信息与感知到的污名有关。
污名感知在所有癫痫患者中都很重要。我们发现城市地区的污名感知程度高于农村地区。此外，缺乏治疗主要是农村地区的一个严重问题。尽管我们未发现感知到的污名与AED使用有关，但我们的研究指出了教育水平和与污名化相关信息的影响。因此，减少污名的协同努力应包括针对癫痫患者教育及其病情信息的策略。
