Associação Brasileira de Epilepsia, São Paulo, Brazil; Programa de Pós-Graduação em Neurociências e Neurologia da EPM/Unifesp, São Paulo, Brazil; Hospital Universitário, University of São Paulo (USP), São Paulo, Brazil.
Associação Brasileira de Epilepsia, São Paulo, Brazil; Departamento de Fisiologia, Escola Paulista de Medicina/Universidade Federal de São Paulo (EPM/Unifesp), São Paulo, Brazil; Programa de Pós-Graduação em Neurociências e Neurologia da EPM/Unifesp, São Paulo, Brazil.
Epilepsy Behav. 2021 Sep;122:108115. doi: 10.1016/j.yebeh.2021.108115. Epub 2021 Jun 15.
PURPOSE: During COVID-19 pandemic the global population is facing an important psychosocial distress. The aim of this study was to evaluate how people with epilepsy (PWE) in Brazil is dealing with the pandemic, in relation to seizure frequency, access to antiseizure medicines (ASM), medical follow-up, and well-being. METHODS: An online questionnaire survey among PWE (group 1) and caregivers (group 2) was applied in the social networks of the Brazilian Association of Epilepsy, the official Brazilian chapter of the International Bureau for Epilepsy. The questionnaire was composed of 46 generic questions in four areas, namely, demographics and baseline clinical data as well as epilepsy and quality-of-life impact by COVID-19 pandemic based on the domains of the abbreviated World Health Organization Quality of Life (WHOQOL-BREF) instrument. RESULTS: The questionnaire was answered by 464 participants including 380 (81.9%) PWE (78.7% female; age 34.3 yrs.; ±9.76) and 84 (18.1%) caregivers (patients' age 14.1 yrs.; ±10.30). During the COVID-19 pandemic, 36.8% of PWE and 36.4% of caregivers reported difficulties in accessing the epilepsy healthcare provider, and visits occurred normally only in 29.7% of PWE and in 34.5% of the caregiveŕs group. Telehealth was not provided for 66.6% of group 1 and for 58.5% of group 2. Lack of availability of ASM was reported by 21.9% of PWE and 28.0% of caregivers in public dispensing units and by 19.2% and 17.8%, respectively, in private pharmacies. Increase in seizures during pandemic was mentioned by 26.3% and 27.9% of groups 1 and 2, respectively. Patients who had increase in seizure frequency had more frequently reported problems with treatment and in quality-of-life concepts. Fear of having a more severe COVID-19 presentation because of epilepsy was reported by 74.5% of PWE and by 89.8% of caregivers. Dissatisfaction with current health status was reported by 36.7% and 38.1% in groups 1 and 2, respectively, and that the support from others has decreased (56.1% and 66.1%, in groups 1 and 2) during the pandemic. The factors with higher Odds Ratio of increase in seizure frequency during pandemic were age >41 yrs., treatment in public healthcare system, drug-resistant epilepsy, adversities in getting ASM in public dispensing units, difficulties with prescription renewals, current financial problems and belief that epilepsy or ASM are risk factors for contracting COVID-19. CONCLUSION: During COVID-19 pandemic in Brazil, PWE and caregivers reported increase in seizures in one-fourth of the patients and several difficulties, namely problems in accessing the healthcare system including ASM dispensation, telehealth, and fear of having a more severe COVID-19 because of epilepsy. There were also physical, psychological, and social concerns which affected quality-of-life-related aspects in this population. These facts may increase treatment gap in epilepsy in Brazil as well in other developing countries.
目的:在 COVID-19 大流行期间,全球人口面临着严重的心理社会困扰。本研究旨在评估巴西的癫痫患者(PWE)在大流行期间如何应对,包括癫痫发作频率、抗癫痫药物(ASM)的获取、医疗随访和幸福感。
方法:在巴西癫痫协会和国际癫痫局巴西分会的社交网络中,对 PWE(第 1 组)和照顾者(第 2 组)进行了一项在线问卷调查。问卷由四个领域的 46 个通用问题组成,分别是人口统计学和基线临床数据以及 COVID-19 大流行对癫痫和生活质量的影响,基于简短的世界卫生组织生活质量(WHOQOL-BREF)量表的领域。
结果:共有 464 名参与者回答了问卷,包括 380 名(81.9%)PWE(78.7%为女性;年龄 34.3 岁;±9.76)和 84 名(18.1%)照顾者(患者年龄 14.1 岁;±10.30)。在 COVID-19 大流行期间,36.8%的 PWE 和 36.4%的照顾者报告在获得癫痫医疗保健提供者方面存在困难,仅 29.7%的 PWE 和 34.5%的照顾者能够正常就诊。第 1 组的 66.6%和第 2 组的 58.5%没有提供远程医疗。21.9%的 PWE 和 28.0%的照顾者在公共配药单位缺乏可用的 ASM,分别有 19.2%和 17.8%在私人药店缺乏可用的 ASM。第 1 组和第 2 组分别有 26.3%和 27.9%的患者报告在大流行期间癫痫发作增加。癫痫发作频率增加的患者更频繁地报告在治疗和生活质量概念方面存在问题。74.5%的 PWE 和 89.8%的照顾者报告担心因癫痫而出现更严重的 COVID-19 表现。第 1 组和第 2 组分别有 36.7%和 38.1%的患者对当前健康状况不满意,在大流行期间,他们表示来自他人的支持减少(第 1 组和第 2 组分别为 56.1%和 66.1%)。癫痫发作频率在大流行期间增加的优势比更高的因素包括年龄>41 岁、在公共医疗保健系统中接受治疗、耐药性癫痫、在公共配药单位获得 ASM 存在困难、处方更新困难、当前经济问题以及相信癫痫或 ASM 是感染 COVID-19 的危险因素。
结论:在巴西 COVID-19 大流行期间,PWE 和照顾者报告说,四分之一的患者癫痫发作增加,并且存在多种困难,包括难以获得医疗保健系统,包括 ASM 配给、远程医疗和因癫痫而担心出现更严重的 COVID-19。此外,还有身体、心理和社会方面的问题,这些问题影响了该人群的生活质量相关方面。这些事实可能会导致巴西乃至其他发展中国家的癫痫治疗差距进一步扩大。
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