key: cord-0940324-7f9g764a authors: Guilhoto, Laura Maria; Mosini, Amanda Cristina; Susemihl, Maria Alice; Pinto, Lécio Figueira title: COVID-19 and epilepsy: How are people with epilepsy in Brazil? date: 2021-06-15 journal: Epilepsy Behav DOI: 10.1016/j.yebeh.2021.108115 sha: 8be87a464d8b1529b83af32f0f128d248d092f9e doc_id: 940324 cord_uid: 7f9g764a 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. The new coronavirus disease An online questionnaire survey among PWE was applied between August 1st and October 10th, 2020 in Brazil. During the study period the country was in social isolation but not in full lockdown. The healthcare services were focused on COVID-19 interventions such as measures of physical distancing that were recommended by regional and local governments. After approval of the local Ethics Committee (CAAE 33078820.0.0000.8647), an anonymous questionnaire composed of 46 generic questions developed on Google Docs Ò was divulged in the social networks of the Brazilian Epilepsy Association, the official Brazilian chapter of the International Bureau for Epilepsy. All participants consented virtually for inclusion, either PWE older than 18 years (group 1) or caregivers (group 2). The caregivers were asked to answer regarding the patient's situation. Although caregiver report of quality of life may be not accurate, we considered these answers as a valid exploratory information. This questionnaire was composed of four areas, namely, demographics and baseline clinical data as well as epilepsy and qualityof-life impact by COVID-19 pandemic. All questions had one of multiple choice except two regarding age and state of residence, and another related to leisure activities. Likert-type quality-of-life questions were based on the domains of the abbreviated World Health Organization Quality of Life (WHOQOL-BREF) instrument [18, 19] . The domains evaluated were physical health, psychological sphere, social relations, and environment. Supplementary Tables 1 and 2 show the questions and domains of the survey. Descriptive and frequency statistical analyses were obtained, and comparisons were made by the SPSS 14.0 program (SPSS Inc. -Chicago) and Statistica 7 (StatSoft Inc). Categorical variables were reported as frequencies (percentages) and continuous variables as the mean ± standard deviation (SD). Percentages were analyzed and compared by Fisher's exact test. Statistical significance in comparisons between the quantitative variables studied was assessed using One-Way ANOVA and Logistic Regression. Odds ratios (ORs) and 95% confidence intervals (CIs) were shown in the final model and p-values <0.050 were considered statistically significant. The questionnaire was answered by 464 participants including 380 (81.9%) adult PWE and 84 (18.1%) caregivers, mainly from the richest areas in the country. Regarding adult PWE, 36.5% had college education and most lived with family, either parents (27.1%), spouse and/or children (45.2%). Most PWE were taking 1 or 2 antiseizure medicines (ASM) as shown in Table 2 . Patient's use of antidepressants was reported by 44.5% of adult PWE and 37.3% of caregivers. Healthcare providers consisted of Brazilian free universal public system in about one-third of the cases, which is different from the governmental data that report that around 70% of the Brazilian population do not have access to private or preferred provider organization (PPO) care [20] . This fact may be a bias, due to more internet access in the richest areas of the country and consequently higher rates of PWE who could afford these latter types of health care. Table 1 describes demographics and clinical data. Increase in seizure frequency was pointed in about one-quarter of patients during pandemic. Lack of availability of ASM was reported both in public dispensing units and private pharmacies. Participants had difficulties with prescription renewals and access to the healthcare provider for epilepsy treatment and a great number of them had appointments postponed or canceled. Before the COVID-19 pandemic direct telehealth and electronic ASM prescriptions were not allowed in Brazil. After March 2020 they were available mainly in private and PPO health care. Telemedicine was unavailable for most of PWE. Epilepsy and use of ASM were considered risk factors for COVID-19 by some participants. Data about treatment during pandemic are presented in Table 2 . Dissatisfaction with health status was reported by 36.7% and 38.1% in groups 1 and 2, and possibility of performance of usual obligations during the pandemic were reported only by 18.7% and 16.9%, respectively. Resting and relaxing was feasible in 21.8% and 17.8% in groups 1 and 2. Patient sleep deprivation was mentioned in 32.9% of PWE and by 33.9% of caregivers. Only 17.1% of PWE considered their sleep latency as adequate followed by a full night sleep, with similar values in the other group (17.8%). There were several psychological concerns of the participants who answered affirmatively some questions described in Table 3 . Loneliness during pandemic was reported by 30% in both groups and most related that the support from others has decreased (56.1% in group 1 and 66.1% in 2). Economic difficulties were reported by 23.5% and 30.5% of groups 1 and 2, and full isolation at home was reported by 40.8% and 55.9%, respectively. Leisure activities mostly cited were music listening, watching television and internet browsing. Patients who had increase in seizure frequency during COVID-19 pandemic had more frequently reported problems with treatment and quality-of-life aspects. Table 4 shows the concerns of this subgroup of participants (p < 0.050). The factors with higher risk of increase in seizure frequency during pandemic were age older than 41 years, treatment in public healthcare system, drug resistant epilepsy, daily seizures before pandemic, use of more than 3 ASM, difficulties in getting ASM in public dispensing units, need to initiate or increase the dose of antidepressant drugs, adversities with prescriptions, current financial problems and the belief that epilepsy or ASM are risk factors for contracting COVID-19. These values are shown in Table 5 and in Supplementary Fig. 1 . Some variables were associated with fear of having COVID-19 and are described in Table 6 and in Supplementary Fig. 1 . There were no significant differences regarding region of residence within the country. This online survey carried out during the first 6-8 months of COVID-19 pandemic with 380 PWE and 84 caregivers composed mostly by residents in the richest areas of Brazil without drug resistant epilepsy has raised several concerns, namely problems in accessing the healthcare system including ASM dispensation and telehealth and fear of having a more severe COVID-19 because of epilepsy. Increase in seizure frequency was reported by circa one-fourth of participants who had also more difficulties with prescription renewals, ASM dispensing, beliefs of higher risk of having COVID-19, psychological and physical complaints regarding health quality-of-life aspects than those without worsening of seizures. Difficulties in accessing health care for epilepsy treatment was a common finding in our survey, as well as with ASM supplies, in agreement with data published in other nations regardless of the national income [17, 21, 24, 26, 27] . Telemedicine was scarcely provided in our sample compared to other countries [11, [21] [22] [23] [24] [25] . Interestingly, reports of low availability of ASM in private pharmacies were present in our study, which may be due to difficulties with pharmaceutical supplies and commercial logistics. These facts during the present sanitary crisis will probably increase the problems regarding the care of PWE worldwide especially in low-resource areas with possible prolonged effects. According to the Pan American Health Organization (PAHO) the estimated gap in epilepsy treatment is approximately 75% and 50%, in low and middleincome countries, respectively [28] . Increase in seizure frequency was reported by circa one-fourth of the participants of our study. These patients were older, had more frequently severe epilepsy, difficulties with prescription renewals and ASM dispensing, especially in the Brazilian public healthcare system. Seizure worsening was reported in other studies during the pandemic, which ranged from 4-35% of the surveyed population [11, 20, 23, [25] [26] [27] 29, [30] [31] [32] . Physical and psychological concerns including beliefs of higher risk of having COVID-19, with new onset use of antidepressants and financial problems were also related to seizure worsening. Increase in seizure frequency due to psychological stress is well known in epilepsy, and probably played an important role during pandemic [31] . We are not aware of other studies that evaluated quality-of-life aspects during COVID-19 pandemic in PWE. Although we did not use a standardized questionnaire, our survey had questions related to the WHO-QOL BREF instrument. Dissatisfaction with health status was reported by circa one-third of the participants as well as several problems regarding physical and psychological aspects that could affect mental health issues and seizure frequency. We have no data on health satisfaction and mental health issues before the pandemic, which limits further conclusions. Other studies showed anxiety and emotional problems through validated scales in PWE attending medical visits during this period [17, 33] . Sleep deprivation was reported by one-third of participants which was also mentioned in other studies [21, 31] that might have affected seizure frequency. Social relations were similarly affected with reduction of support from others. This fact is very concerning since the difficulties faced by PWE, namely in social relations, are very important in terms of quality of life and stigma [34] . Although this sample was probably biased towards a less vulnerable socio-economic group, financial difficulties were reported. This raises concerns mainly in developing countries due to inequalities, resource constraints which have been mostly affected by the impact of Table 4 Comparison of people with increased seizure frequency with those without worsening during pandemic. COVID-19 [35] . Leisure activities were carried out at home, in a sedentary form basically involving intellectual tasks. The low levels of physical activity may have further affected mental health and aggravated seizures [36] . Fear of having a more severe COVID-19 due to epilepsy was reported in our study mainly by caregivers. Also, the fear of contracting COVID-19 was higher in females, people with low schooling and financial restrictions besides those who presented difficulties in getting ASM in public dispensing units and with more severe epilepsy. The same findings were reported by other authors [37] . The misconceptions that epilepsy and ASM are associated with an increased risk of having COVID-19 reveal a window of opportunity for patient associations to offer scientific information for promoting quality of life as well stigma reduction in PWE. Online surveys are always subject to bias considering internet access and psychological profile of the persons in adhering to this type of activity. Most of the participants were female which may reflect some of the concerns biased by sex. The poorest areas of Brazil were not well represented in the survey probably because of schooling and internet access limitations. This could have masked more specific regional difficulties with health care and quality-of-life aspects. Duration and time of the study, carried out during the pandemic, with rapidly evolving changes in the sanitary crisis, are other limitations of the present study. During pandemic PWE and caregivers reported through an online survey of the Brazilian Association of Epilepsy seizure worsening in one-fourth of participants as well 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 aspects in this population. These facts may increase treatment gap in epilepsy in Brazil as well as in other developing countries and the worsening of the health conditions of this population as a public health priority should be stressed. We have no conflicts of interest to declare. All authors declare no competing interests. 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We are thankful for the statistical assistance of Patricia Guilhem and the collaboration of Dr. Michelle Longoni Calió and Fernanda de Jesus Gomes Vieira. Supplementary data to this article can be found online at https://doi.org/10.1016/j.yebeh.2021.108115.