The psychosocial impact of COVID-19 within the first six months of the pandemic on youth with epilepsy and their caregivers

Modi, Avani C.; Patel, Anup D.; Stevens, Jack; Smith, Gigi; Huszti, Heather C.; Guilfoyle, Shanna M.; Mara, Constance A.; Schmidt, Matthew; Wagner, Janelle L.

doi:10.1016/j.yebeh.2021.107855

Cited by 6 publications

(2 citation statements)

References 35 publications

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“…People with epilepsy are, overall, not considered to be at greater risk of COVID-19 infection or of developing a more severe form of the disease [12] , [13] , [14] , [15] , [16] , [17] , [18] . Other factors, including difficulty obtaining antiseizure medications (ASMs) and problems in accessing the health system, may play a role in worsening seizure control and exacerbating comorbidities in this group [19] , [20] , [21] , [22] , [23] , [24] , [25] , [26] , [27] , [28] , [29] , [30] .…”

Section: Introductionmentioning

confidence: 99%

Impact of the COVID-19 pandemic on people with epilepsy: Findings from the Brazilian arm of the COV-E study

Andraus

Thorpe

Tai

et al. 2021

Epilepsy & Behavior

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The COVID-19 pandemic has had an unprecedented impact on people and healthcare services. The disruption to chronic illnesses, such as epilepsy, may relate to several factors ranging from direct infection to secondary effects from healthcare reorganization and social distancing measures. Objectives As part of the COVID-19 and Epilepsy (COV-E) global study, we ascertained the effects of COVID-19 on people with epilepsy in Brazil, based on their perspectives and those of their caregivers. We also evaluated the impact of COVID-19 on the care delivered to people with epilepsy by healthcare workers. Methods We designed separate online surveys for people with epilepsy and their caregivers. A further survey for healthcare workers contained additional assessments of changes to working patterns, productivity, and concerns for those with epilepsy under their care. The Brazilian arm of COV-E initially collected data from May to November 2020 during the country's first wave. We also examined national data to identify the Brazilian states with the highest COVID-19 incidence and related mortality. Lastly, we applied this geographic grouping to our data to explore whether local disease burden played a direct role in difficulties faced by people with epilepsy. Results Two hundred and forty-one people returned the survey, 20% were individuals with epilepsy ( n = 48); 22% were caregivers ( n = 53), and 58% were healthcare workers ( n = 140). Just under half (43%) of people with epilepsy reported health changes during the pandemic, including worsening seizure control, with specific issues related to stress and impaired mental health. Of respondents prescribed antiseizure medication, 11% reported difficulty taking medication on time due to problems acquiring prescriptions and delayed or canceled medical appointments. Only a small proportion of respondents reported discussing significant epilepsy-related risks in the previous 12 months. Analysis of national COVID-19 data showed a higher disease burden in the states of Sao Paulo and Rio de Janeiro compared to Brazil as a whole. There were, however, no geographic differences observed in survey responses despite variability in the incidence of COVID-19. Conclusion Our findings suggest that Brazilians with epilepsy have been adversely affected by COVID-19 by factors beyond infection or mortality. Mental health issues and the importance of optimal communication are critical during these difficult times. Healthcare services need to find nuanced approaches and learn from shared international experiences to provide optimal care for people with epilepsy as the direct burden of COVID-19 improves in some countries. In contrast, others face resurgent waves of the pandemic.

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Section: Introductionmentioning

confidence: 99%

Impact of the COVID-19 pandemic on people with epilepsy: Findings from the Brazilian arm of the COV-E study

Andraus

Thorpe

Tai

et al. 2021

Epilepsy & Behavior

View full text Add to dashboard Cite

show abstract

“…The full-text screening of these studies led to the exclusion of 60 studies that did not meet the inclusion criteria. Thus, a total of 28 studies with 7,959 patients/caregivers fulfilled the eligibility criteria for inclusion in the meta-analysis [14] , [15] , [16] , [17] , [18] , [19] , [20] , [21] , [22] , [23] , [24] , [25] , [26] , [27] , [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] , [39] , [40] , [41] . Table 1 summarizes the findings of the included studies.…”

Section: Resultsmentioning

confidence: 99%

Psychological impact of the COVID-19 pandemic for patients with epilepsy: A systematic review and meta-analysis

Kubota

2021

Epilepsy & Behavior

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The effect of illness-related fears of parents of children with epilepsy during the COVID-19 period on their children's seizure self-efficacy

Ayar,

Bektas,

Ünalp

et al. 2024

Archives de Pédiatrie

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The psychosocial impact of COVID-19 within the first six months of the pandemic on youth with epilepsy and their caregivers

Cited by 6 publications

References 35 publications

Impact of the COVID-19 pandemic on people with epilepsy: Findings from the Brazilian arm of the COV-E study

Impact of the COVID-19 pandemic on people with epilepsy: Findings from the Brazilian arm of the COV-E study

Psychological impact of the COVID-19 pandemic for patients with epilepsy: A systematic review and meta-analysis

The effect of illness-related fears of parents of children with epilepsy during the COVID-19 period on their children's seizure self-efficacy

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