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Challenges faced by people with epilepsy on ketogenic diet therapy and their caregivers during the COVID-19 pandemic in Brazil.
Alencastro Veiga Domingues Carneiro, Raquel; Dos Santos Lunardi, Mariana; Matheus Uberna Giacomini, Felipe; Kurrle Rieger, Débora; Dubois Moreira, Júlia; Carina Ribeiro da Silva, Letícia; Pereira Brito Sampaio, Leticia; Lin, Katia.
  • Alencastro Veiga Domingues Carneiro R; Medical Sciences Graduate Program, Federal University of Santa Catarina (UFSC), Florianópolis, Santa Catarina, Brazil. Electronic address: raquel.alencastro.c@gmail.com.
  • Dos Santos Lunardi M; Medical Sciences Graduate Program, Federal University of Santa Catarina (UFSC), Florianópolis, Santa Catarina, Brazil; Neurology Division, Federal University of Santa Catarina (UFSC), Florianópolis, Santa Catarina, Brazil.
  • Matheus Uberna Giacomini F; Medical Sciences Graduate Program, Federal University of Santa Catarina (UFSC), Florianópolis, Santa Catarina, Brazil.
  • Kurrle Rieger D; Graduate Program in Nutrition, Federal University of Santa Catarina (UFSC), Florianópolis, Santa Catarina, Brazil; Translational Nutrition Neuroscience Working Group, CNPq Directory of Research Groups, Florianópolis, Santa Catarina, Brazil.
  • Dubois Moreira J; Graduate Program in Nutrition, Federal University of Santa Catarina (UFSC), Florianópolis, Santa Catarina, Brazil; Translational Nutrition Neuroscience Working Group, CNPq Directory of Research Groups, Florianópolis, Santa Catarina, Brazil.
  • Carina Ribeiro da Silva L; Translational Nutrition Neuroscience Working Group, CNPq Directory of Research Groups, Florianópolis, Santa Catarina, Brazil; Department of Nutrition, Federal University of Santa Catarina (UFSC), Florianópolis, Santa Catarina, Brazil.
  • Pereira Brito Sampaio L; FCMUSP, São Paulo, Brazil.
  • Lin K; Medical Sciences Graduate Program, Federal University of Santa Catarina (UFSC), Florianópolis, Santa Catarina, Brazil; Neurology Division, Federal University of Santa Catarina (UFSC), Florianópolis, Santa Catarina, Brazil; Translational Nutrition Neuroscience Working Group, CNPq Directory of Researc
Epilepsy Behav ; 122: 108193, 2021 09.
Article in English | MEDLINE | ID: covidwho-1307272
ABSTRACT

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.
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Full text: Available Collection: International databases Database: MEDLINE Main subject: Epilepsy / Diet, Ketogenic / COVID-19 Type of study: Experimental Studies / Observational study / Qualitative research Limits: Adult / Humans Country/Region as subject: South America / Brazil Language: English Journal: Epilepsy Behav Journal subject: Behavioral Sciences / Neurology Year: 2021 Document Type: Article

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Full text: Available Collection: International databases Database: MEDLINE Main subject: Epilepsy / Diet, Ketogenic / COVID-19 Type of study: Experimental Studies / Observational study / Qualitative research Limits: Adult / Humans Country/Region as subject: South America / Brazil Language: English Journal: Epilepsy Behav Journal subject: Behavioral Sciences / Neurology Year: 2021 Document Type: Article