Challenges faced by people with epilepsy on ketogenic diet therapy and their caregivers during the COVID-19 pandemic in Brazil.

BACKGROUND: Although ketogenic diet therapy (KDT) is a well-established, nonpharmacologic therapeutic option for patients with pharmacoresistant epilepsy, its availability is still not widespread. The COVID-19 pandemic may have further restricted the access of people with pharmacoresistant epilepsy (PWE) to KDT. Thus, we evaluated the experiences of Brazilian PWE and their caregivers during the first year of the pandemic. METHODS: An online self-assessed survey containing 25 questions was distributed via social media to be answered by PWE treated with KDT or their caregivers through Google Forms from June 2020 to January 2021. Mental health was assessed using the DASS and NDDI-E scales. RESULTS: Fifty adults (>18 yo), of whom 68% were caregivers, answered the survey. During the pandemic, 40% faced adversities in accessing their usual healthcare professionals and 38% in obtaining anti-seizure medication (ASM). Despite these issues, 66% of those on KDT could comply with their treatment. Those struggling to maintain KDT (34%) named these obstacles mainly: diet costs, social isolation, food availability, and carbohydrate craving due to anxiety or stress. An increase in seizure frequency was observed in 26% of participants, positively associated with difficulties in obtaining ASM [X2 (1, N = 48) = 6.55; p = 0.01], but not with KDT compliance issues. CONCLUSIONS: People with pharmacoresistant epilepsy and undergoing KDT, as well as their caregivers, faced additional challenges during the COVID-19 pandemic, not only difficulties in accessing healthcare and KDT maintenance but also on seizure control and mental health.

Patients with epilepsy during the COVID-19 pandemic: Depressive symptoms and their association with healthcare access.

BACKGROUND: The coronavirus disease 2019 (COVID-19) outbreak impacted the lives of worldwide people with epilepsy (PWE) in various aspects, particularly in those countries most significantly affected by this pandemic, such as Brazil. We aimed to investigate the prevalence of depressive symptoms in PWE and their correlation with epilepsy features and access to treatment. METHODS: PWE were invited to answer a cross-sectional online-based survey to assess and rate depressive symptoms using the NDDI-E during the first year of the COVID-19 pandemic and its relation to multiple lifestyles epilepsy clinical aspects. RESULTS: A total of 490 PWE were recruited. The prevalence of depressive symptoms during the COVID-19 pandemic was 35.3% (cutoff score > 15 on NDDI-E). The factors associated with higher NDDI-E scores were: female sex, increased seizure frequency, barriers to access to their treating physician and antiseizure medication, and unemployment. Regarding the pandemic impact on PWE healthcare, 29.2% reported restricted access to their medication, 46.1% barriers to access their physicians, 94.2% had their consultations canceled due to the pandemic, and 28.4% had seizure worsening in this period. CONCLUSION: The COVID-19 pandemic affected PWE access to the healthcare system. Depressive symptoms were more severe in patients with higher seizure frequency who had difficulties obtaining proper medical care. The COVID-19 pandemic may impact the healthcare and mental wellbeing of patients with chronic diseases such as epilepsy. Nevertheless, prospective studies on epilepsy and COVID-19 are still lacking.

Challenges in telemedicine for adult patients with drug-resistant epilepsy undergoing ketogenic diet treatment during the COVID-19 pandemic in the public healthcare system in Brazil.

Hygienic and sanitary measures and social distancing policies implemented during the new coronavirus disease - COVID-19 - pandemic have altered the care and follow-up provided by healthcare professionals for patients with chronic diseases, including patients with epilepsy (PWEs). Telemedicine has become a solution for the healthcare of PWEs in many developed countries. In this short communication, we trace a particular perspective for the application of telemedicine for PWEs undergoing ketogenic diet (KD) treatment, considering the social and economic difficulties faced by healthcare teams in resource-poor countries, such as Brazil. During the pandemic, financial strain was the main impediment to following KD. The pandemic increased socioeconomic insecurity and access to KD-related products, as well as increasing anxiety in 71% of PWE, impacting their KD treatment follow-up. The challenges of telemedicine in Brazil include not only social and economic issues but also access to food, healthcare services, and education for the population, in addition to digital inclusion.