Impact of COVID-19 on the lives and psychosocial well-being of persons with epilepsy during the third trimester of the pandemic: Results from an international, online survey

Millevert, Charissa; Hees, Stijn Van; Fodjo, Joseph Nelson Siewe; Wijtvliet, Veerle; Villela, Edlaine Faria de Moura; Rosso, Bárbara; Gil‐Nagel, Antonio; Weckhuysen, Sarah; Colebunders, Robert

doi:10.1016/j.yebeh.2021.107800

Cited by 31 publications

(40 citation statements)

References 30 publications

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“…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].…”

Section: Discussionsupporting

confidence: 88%

“…During the pandemic, people have faced a higher level of stress. Daily updates on the number of cases and mortality, lack of information about the virus, false news, uncertainty about the future, and the need for social isolation resulted in increased psychological problems and sleep disorders, more intense in PWE [16,17]. Surveys carried out in several countries point out significant impact of the pandemic in this population [11,17].…”

mentioning

confidence: 99%

“…Daily updates on the number of cases and mortality, lack of information about the virus, false news, uncertainty about the future, and the need for social isolation resulted in increased psychological problems and sleep disorders, more intense in PWE [16,17]. Surveys carried out in several countries point out significant impact of the pandemic in this population [11,17]. The aim of this study was to assess how PWE in Brazil are being affected by the pandemic, with regard to seizure frequency, medical follow-up, prescriptions, access to medicines, and well-being.…”

mentioning

confidence: 99%

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COVID-19 and epilepsy: How are people with epilepsy in Brazil?

Guilhoto

Mosini

Susemihl³

et al. 2021

Epilepsy & Behavior

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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.

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Section: Discussionsupporting

confidence: 88%

mentioning

confidence: 99%

mentioning

confidence: 99%

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COVID-19 and epilepsy: How are people with epilepsy in Brazil?

Guilhoto

Mosini

Susemihl³

et al. 2021

Epilepsy & Behavior

View full text Add to dashboard Cite

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“…Increased seizure frequency, difficulties in obtaining antiseizure medications, cancelled appointments and investigations, alterations in sleep patterns, mood changes, mental health difficulties, and caregiver stress and anxiety have all been reported. 1 , 2 , 3 For PWE who are newly diagnosed and their caregivers, the pandemic has been especially challenging, with limited and/or reduced access to in-person support services and agencies, isolation from family members and friends, and the stress of coping with the uncertainty of a new diagnosis.…”

mentioning

confidence: 99%

“…Furthermore, sleep disturbances, lack of adherence to antiseizure medications, increased seizure frequency, and lack of access to health care, all of which have been cited during the COVID pandemic, may have the potential to impact mortality in PWE. 1 , 2 , 3 , 10 Failure to discuss SUDEP among PWE and their caregivers may also lead to feelings of anger, frustration, and distrust of health care professionals.…”

mentioning

confidence: 99%

Prioritizing Seizure Safety and SUDEP Counseling in People With Epilepsy and Their Caregivers During the COVID-19 Pandemic

Whitney

RamachandranNair

2021

Pediatric Neurology

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Challenges for low middle‐income people with epilepsy during the COVID‐19 pandemic:Lessons learnt, call for action

et al. 2022

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Objective The COVID‐19 pandemic impacted the care of people with epilepsy (PWE). Several online surveys were conducted but there is limited data regarding the impact on low‐income PWE from lower‐middle income countries (LMICs) who have no access or ability to answer online surveys. The purpose of this interview was to understand the challenges faced by low‐income PWE during the lockdown phase of the pandemic. Method PWE visiting the epilepsy specialty outpatient department of a tertiary referral government hospital to avail of subsidized services were interviewed. In the interview, they discussed challenges in obtaining medical care, the impact on wellbeing, employment, and vaccination status during the lockdown phase of the pandemic. Results Out of the 214 PWE interviewed, 20.6% had increased seizure frequency, 28.9% did not have access to medication mainly due to travel restrictions, 30.5% reported lack of availability of medication and 50% were not able to afford the medication mainly due to loss of income. 51% were unable to have follow‐up consultations. 36% reported worsening of mood and some reported impact on other aspects of wellbeing. The impact on wellbeing was significantly associated with an increase in seizure frequency ( P < .05). The study revealed hesitation related to vaccines in the majority and expectations of financial support by the government and assistance for procuring medication. There was a lack of awareness about telemedicine services and the same was not adequately offered by government hospitals. Significance The study underscores the need to learn lessons from the challenging experiences of low‐income PWE and create an action plan for the future to address the issues of lack of affordability of medical care and access to telemedicine. It is critical that the care of the marginalized, underrepresented PWE from lower‐middle income countries is not neglected during a pandemic.

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Impact of COVID-19 on the lives and psychosocial well-being of persons with epilepsy during the third trimester of the pandemic: Results from an international, online survey

Cited by 31 publications

References 30 publications

COVID-19 and epilepsy: How are people with epilepsy in Brazil?

COVID-19 and epilepsy: How are people with epilepsy in Brazil?

Prioritizing Seizure Safety and SUDEP Counseling in People With Epilepsy and Their Caregivers During the COVID-19 Pandemic

Challenges for low middle‐income people with epilepsy during the COVID‐19 pandemic:Lessons learnt, call for action

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