Medical Sciences Graduate Program, Federal University of Santa Catarina (UFSC), Florianópolis, Santa Catarina, Brazil.
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.
Epilepsy Behav. 2021 Sep;122:108193. doi: 10.1016/j.yebeh.2021.108193. Epub 2021 Jul 10.
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.
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.
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 [X (1, N = 48) = 6.55; p = 0.01], but not with KDT compliance issues.
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.
尽管生酮饮食疗法（KDT）是一种成熟的、非药物治疗选择，适用于耐药性癫痫患者，但它的应用仍然不广泛。COVID-19 大流行可能进一步限制了耐药性癫痫患者（PWE）获得 KDT 的机会。因此，我们评估了巴西 PWE 及其照顾者在大流行第一年的经历。
我们通过社交媒体发布了一份包含 25 个问题的在线自我评估调查，让接受 KDT 治疗的 PWE 或他们的照顾者通过 Google Forms 在 2020 年 6 月至 2021 年 1 月期间回答。使用 DASS 和 NDDI-E 量表评估心理健康。
50 名成年人（>18 岁）回答了调查，其中 68%为照顾者。在大流行期间，40%的人在获得常规医疗保健专业人员和 38%的人在获得抗癫痫药物（ASM）方面遇到困难。尽管存在这些问题，仍有 66%的 KDT 使用者能够遵守治疗方案。那些难以维持 KDT（34%）的人将这些障碍主要归因于：饮食成本、社交隔离、食物供应以及由于焦虑或压力导致的碳水化合物渴望。26%的参与者观察到癫痫发作频率增加，与获得 ASM 的困难呈正相关[X（1，N=48）=6.55；p=0.01]，但与 KDT 遵守问题无关。
耐药性癫痫患者和接受 KDT 的患者及其照顾者在 COVID-19 大流行期间面临着额外的挑战，不仅在获得医疗保健和维持 KDT 方面存在困难，而且在控制癫痫发作和心理健康方面也存在困难。
