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Genetic epilepsies and COVID-19 pandemic: Lessons from the caregiver perspective

  • Vithas Madrid Neuroscience Intitute

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The COVID-19 pandemic represents an unprecedented international crisis with significant health, economic, and social consequences. This scenario has forced the medical community to face new practical and ethical challenges that require rapid responses. Early data show a variety of neurological manifestations in a significant proportion of patients with SARS-CoV-2 infection. However, there is little documentation of the effects on people with epilepsy. Patients with developmental and epileptic encephalopathies (DEEs) and their caregivers face multiple challenges during the COVID-19 pandemic that might lead to worse seizure and psychological outcomes in this population. According to our results, these would be related to both the direct impact on the patients of the COVID-19 infection and the lockdown, and indirectly to health system barriers (so-called “secondary harm”) and sociopsychological and economic burdens of the caregiver.
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Epilepsia. 2020;00:1–3.
Received: 23 April 2020
Accepted: 26 April 2020
DOI: 10.1111/epi.16537
Genetic epilepsies and COVID-19 pandemic: Lessons from the
caregiver perspective
To the Editors:
The COVID-19 pandemic represents an unprecedented in-
ternational crisis with significant health, economic, and
social consequences. This scenario has forced the medical
community to face new practical and ethical challenges that
require rapid responses. Early data show a variety of neuro-
logical manifestations in a significant proportion of patients
with SARS-CoV-2 infection,1,2 although there is little docu-
mentation of the effects on people with epilepsy.2,3 In this
study, we assess the impact of the COVID-19 pandemic in a
particularly vulnerable population: individuals with genetic
developmental and epileptic encephalopathies (DEEs) and
their caregivers. Although children appear to present milder
COVID-19 manifestations,4 patients with DEEs present an
increased susceptibility to certain triggers related to viral in-
fections and respiratory comorbidities, are at risk of missing
medical follow-up and emergency assistance due to health
care resource allocation focus on COVID-19 patients, and
are exposed to broader sociopsychological impact related to
lockdown. Therefore, this study evaluates the impact of the
pandemic on patients with genetic DEEs and their caregivers
in Spain, one of the current hotspots of the pandemic.
This study was a cross-sectional survey open between
April 7 and April 11, 2020, 23-27days after national lock-
down was established in Spain. Participants were caregivers
of DEE patients with proven or suspected genetic origin,
recruited through patient advocacy groups, using inter-
net-based sources. They were asked to fill out a structured
questionnaire. Informed written consent was obtained from
each caregiver. This methodology, previously used for Dravet
syndrome and other neurodevelopmental diseases,5 permits
collecting larger samples for rare conditions. Statistical anal-
ysis was performed with R v3.6.2.
A total of 277 responses from caregivers were collected,
covering several different conditions. The most frequent ge-
netic diagnoses were as follows: SCN1A, CDKL5, STXBP1,
KCNQ2, PCDH19, and SYNGAP1 (see Table 1). DEEs of
suspected genetic origin with negative genetic findings were
reported by 36.8%. Mean age was 12.4years; 58.1% were fe-
male. Fifteen patients (5.5%) were reported to present typical
COVID-19 symptoms. Only seven of them were tested with
SARS-CoV-2 polymerase chain reaction, with a positive re-
sult in three cases. The type of DEE of these three patients
was Dravet syndrome, STXBP1 encephalopathy, and DEE
without genetic diagnosis. All of them had mild symptoms,
and none needed hospitalization or showed either seizure or
behavioral worsening. Because of the high rate of mild or
asymptomatic cases in pediatric populations, we also asked
whether there had been confirmed COVID-19 cases in peo-
ple with close contact with the patient. That was the case in
30 (10.8%).
Overall, 39 (14.1%) and 87 (30.3%) cases reported sei-
zure frequency increase or behavioral deterioration during
the lockdown, respectively. In addition, there was one case
of status epilepticus and nine patients who experienced some
degree of neurological regression. Caregivers reported a
series of partly overlapping factors that could contribute to
seizure or behavioral deterioration: (1) new onset symptoms
of anxiety (68.6%) or depression (69.7%) in caregivers, (2)
inability to reach their neurologist using telemedicine re-
sources (62.8%), (3) living in homes without a terrace or yard
(62.8%), (4) economic problems (62.4%), (5) loss of regular
stimulation and physical therapies (51.8%), (6) avoidance of
seeking medical advice for serious health issues in the emer-
gency department due to fear of COVID-19 (20.6%), (7) can-
celation of essential medical appointments (18.5%), and (8)
difficulties finding their antiseizure medication (ASM) at a
pharmacy (8.3%). Some of these factors might be affected by
the oversaturated health care system, mainly in the Spanish
regions with the highest incidence of COVID-19 (Madrid or
Catalonia), where 55.5% of the survey responders live.6 To
explore the association between these factors and epilepsy or
behavior worsening we performed bivariate (see Table1) and
multivariate analysis. Multivariate logistic regression showed
that the main variables associated with seizure increase
wereage (P=.034) and difficulties finding ASM (P=.05),
whereas the main variables associated with behavioral dete-
rioration were type of epilepsy (P=.015), living in a home
without a terrace or yard (P=.009), and caregivers’ anxiety
© 2020 International League Against Epilepsy
In conclusion, although more research is needed and a
cross-sectional design has obvious limitations, patients with
DEEs and their caregivers face multiple challenges during
the COVID-19 pandemic that might lead to worse seizure
and psychological outcomes in this population. According to
our results, these would be related to both the direct impact
on the patients of the COVID-19 infection and the lockdown,
and indirectly to health system barriers (so-called “secondary
harm”7) and sociopsychological and economic burdens of the
The authors thank all of the families who took the time to
respond to the survey. The survey was implemented in col-
laboration with several Spanish patient advocacy groups,
including ApoyoDravet, Fundación Síndrome de West, and
the Spanish Associations for STXBP1, CDKL5, PCDH19,
SYNGAP1, SCN2A, GNAO1, SCN8A,and KCNQ2 among
others. We thank all of them as well. This research did
not receive any grant from public, commercial, or not-for-
profit sector funding agencies.
None of the authors has any conflict of interest to disclose.
We confirm that we have read the Journal's position on issues
involved in ethical publication and affirm that this letter is
consistent with those guidelines.
1Epilepsy Unit, Department of Neurology, Ruber
Internacional Hospital, Madrid, Spain
2Epilepsy Unit, Department of Neuroscience,
Corachan Clinic, Barcelona, Spain
3Loulou Foundation, London, UK
4Epilepsy Unit, Department of Neurology, Ramon y
Cajal University Hospital, Madrid, Spain
TABLE 1 Changes in epilepsy and behavior according to type of genetic epilepsy and other relevant variables during the pandemic
worsening P
worsening P
Type of genetic epilepsy
Dravet syndrome 50 (94.3) 3 (5.7) 37 (69.8) 16 (30.2)
CDKL5 deficiency disorder 19 (90.5) 2 (9.5) 18 (85.7) 3 (14.3)
STXBP1 encephalopathy 15 (75) 5 (25) 17 (85) 3 (15)
KCNQ2 encephalopathy 14 (100) 0 (0) 7 (50) 7 (50)
PCDH19-related epilepsy 11 (91.7) 1 (8.3) 11 (91.7) 1 (8.3)
SYNGAP1 disorder 8 (100) 0 (0) 3 (37.5) 5 (62.5)
Other genetic DEEsa 39 (83) 8 (17) 30 (63.8) 17 (36.2)
DEEs without genetic diagnosis 82 (80.4) 20 (19.6) 70 (68.6) 32 (31.4)
Total 238 (85.9) 39 (14.1) .117 193 (69.7) 84 (30.3) .038
Other relevant variables
Current age 10 (6.1) 12 (6.2) .088 10 (6.1) 10 (6.1) .575
COVID-19 in patientb 11 (73.3) 4 (26.7) .137 11 (73.3) 4 (26.7) .9
COVID-19 in close contactsb 21 (70) 9 (30) .021 17 (56.7) 13 (42.3) .093
COVID-19 high-incidence region 125 (82.7) 26 (17.3) .084 101 (66.9) 50 (33.1) .251
Cancelation of relevant medical visits 38 (74.5) 13 (25.5) .01 30 (58.8) 21 (41.2) .058
Difficulties finding ASM at pharmacy 15 (65.2) 8 (34.8) .008 16 (69.6) 7 (30.4) .968
Home without terrace or yard 146 (83.9) 28 (16.1) .21 113 (65.3) 60 (34.7) .03
New onset anxiety 158 (83.2) 32 (16.8) .051 115 (60.8) 74 (39.2) <.001
Note: Quantitative variables are expressed as median (interquartile range), qualitative variables as frequency (%).
Abbreviations: ASM, antiseizure medication; DEE, developmental and epileptic encephalopathy.
aOther genetic diagnoses with more than one case were: SCN8A and GNAO1 (n = 5 each), SCN2A (n = 4), and CACNA1A, TSC1, and SCN9A (n = 3 each).
bCOVID-19 cases are suspected or confirmed in patients, confirmed in contacts.
5Epilepsy Unit, Department of Neurology, Clinico San
Carlos University Hospital, Madrid, Spain
Angel Aledo-Serrano
Ángel Aledo-Serrano
Rafael Toledano
Antonio Gil-Nagel
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How to cite this article: Aledo-Serrano Ángel,
Mingorance Ana, Jiménez-Huete Adolfo, Toledano
Rafael, García-Morales Irene, Anciones Carla,
Gil-Nagel Antonio et al. Genetic epilepsies and
COVID-19 pandemic: Lessons from the caregiver
perspective. Epilepsia. 2020;00:1–3. https://doi.
... However, seizures as presenting manifestation of COVID-19 were more frequent in PWE (median age 41 y) than in people without epilepsy [4]. While acute symptomatic seizures or worsening epilepsy control in children with epilepsy (CWE) have been less commonly reported with COVID-19, the pandemic has gravely impacted the care of CWE [5,6]. The occurrence of COVID-19 in a child with pre-existing epilepsy may have varied implications depending on the type of epilepsy or epilepsy syndrome, and ongoing medications. ...
... Under-testing in infants and young children is not just limited to developing countries. As seen in a Spanish study, among 15 children with DEE with typical COVID-19 symptoms, only 7 were tested with RT-PCR [5]. ...
... Unlike all the previously reported children with DEE or infantile spasms (with genetic or presumed genetic etiology) with COVID-19, 3 of 5 children in the current study had underlying acquired structural etiology [5,18]. This concurs with a predominance of structural etiology in developing countries [19][20][21]. ...
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Objectives: To study the course of West syndrome (WS) and coronavirus disease-19 (COVID-19) in children with WS who contracted SARS-CoV-2 infection. Methods: This ambispective study was conducted at a tertiary-care center in North India between December 2020 and August 2021 after approval from the Institute Ethics Committee. Five children with WS, positive for COVID-19 based on RT-PCR, fulfilled the inclusion criteria. Results: One child with COVID-19 during the first wave was retrospectively included while four children (of the 70 children screened) were prospectively enrolled. The median age at onset of epileptic spasms was 7 mo (2 boys), and that at presentation with COVID-19 was 18.5 mo. Three had underlying acquired structural etiology. Three were in remission following standard therapy, while two had ongoing spasms at the time of COVID-19 illness. During the illness, two of those in remission continued to be in remission while one child had a relapse. The children with ongoing epileptic spasms had variable course [one had persistent spasms and other had transient cessation lasting 3 wk from day 2 of COVID-19 illness, but electroencephalography (on day 8 of COVID-19 illness) continued to show hypsarrhythmia]. Fever was the most typical symptom (and sometimes the only symptom) of COVID-19, with a duration ranging from 1-8 d. Two children had moderate COVID-19 illness requiring hospitalization, while the rest had a mild illness. All the affected children had complete recovery from COVID-19. Conclusion: The severity of COVID-19 illness in children with WS is often mild, while the subsequent course of WS is variable.
... COVID-19 not only affects public health, but also affects psychological and physical stress, especially depression, anxiety, mental stress and sleep related problems, at both individual and global levels probably due to enforced changes in routines due to COVID-19-related lockdown [7,17,18,[31][32][33]. Previous population-based studies have demonstrated that mood disorders are frequently associated with patients with epilepsy regardless of adults or children [34]. ...
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The coronavirus disease 2019 (COVID-19) pandemic has disrupted health care worldwide. As the pandemic has been prolonged, quarantine restrictions have been lightened gradu-ally, which can influence outcomes of pediatric patients with chronic disease such as epi-lepsy by increase of susceptibility of the COVID-19 infection. The aim of this study was to determine impacts of COVID-19 pandemic on seizure control and identify potential risk factors that might worsen seizure attacks during the pandemic in children with epilepsy. We performed a retrospective chart review of 48 pediatric patients with epilepsy during the COVID-19 pandemic from January 2016 to July 2022. During the COVID-19 pandemic period, 25% of pediatric patients experienced sei-zure worsening, showing an increase in seizure frequency or duration or both. Factors associated with worsening seizures during pandemic were: diagnosis of epi-lepsy less than one year, comorbid conditions with cerebral palsy or having a tracheosto-my or a PEG, and infection with other viruses (respiratory syncytial virus, influenza virus A, influenza virus B) rather than COVID-19 infection. Our finding highlights the need to proactively monitor and regularly follow up (es-pecially short period of time) patients after they are diagnosed with epilepsy. It is also important to properly manage those who are susceptible to serious illness and keep sea-sonal viral infections under surveillance to manage exacerbated seizure in children with epilepsy. Furthermore, pediatric physicians should not overlook surveillance of seasonal respiratory viruses since quarantine restrictions are getting eased.
... Chung et al [ 16], described the rare diseases situation in Hong Kong and reported an important impact on mental health and patients' status during the pandemic. Many other groups have since explored the consequences of the pandemic on different populations suffering from various diseases, such as cancer [17], developmental and epileptic encephalopathies [18], ST-segmentelevation myocardial infarction [19], narcolepsy [20], painful polyneuropathy [21], or complex connective tissue diseases [22], among others. All of them report negative consequences for their patients because of the COVID-19 pandemic, stressing the importance of such an event in populations suffering from chronic conditions. ...
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Introduction: The Covid-19 pandemic soon became an international health emergency raising concern about its impact not only on physical health but also on quality of life and mental health. Rare diseases are chronically debilitating conditions with challenging patient care needs. We aimed to assess the quality of life and mental health of patients with rare diseases in Spain, with a special focus on inherited metabolic disorders (IMD). Methods: A prospective case-control study was designed, comparing 459 patients suffering from a rare disease (including 53 patients with IMD) and 446 healthy controls. Quality of life (QoL) and mental health were assessed using validated scales according to age: KINDL-R and the Pediatric Symptom Checklist (PSC) for children and the WhoQoL-Bref questionnaire, GAD and PHQ-9 in adults. Results: First, children and adults (but not adolescents) with IMD showed greater psychological effects than controls (p = 0.022, p = 0.026 respectively). Second, when comparing QoL, only adult patients with IMD showed worse score than controls (66/100 vs 74,6/100 respectively, p = 0.017). Finally, IMD had better quality of life than other rare neurological and genetic diseases (p = 0.008) or other rare diseases (p < 0.001 respectively) but similar alteration of the mental status. Conclusions: Our data show that the pandemic had a negative impact on mental health that is more evident in the group of patients with IMD. Young age would behave as a protective factor on the perception of QoL. Furthermore, patients with IMD show a better QoL than other rare diseases.
... 5 Berdasarkan penelitian kami, riwayat masuk IGD karena kejang terjadi pada 30,2% subjek. Sebuah survei 7 Kepatuhan pasien dalam penggunaan OAE menjadi hal yang penting di masa pandemi COVID-19. Berdasarkan temuan kami, kepatuhan pasien terhadap penggunaan OAE tidak mengalami perubahan (63,1%), diikuti oleh peningkatan kepatuhan (32,5%). ...
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Latar belakang. Pandemi coronavirus disease 2019 (COVID-19) yang disebabkan severe acute respiratory syndrome coronavirus 2 (SARS CoV-2) telah memengaruhi pelayanan kesehatan. Hal ini dapat berdampak pada keterlambatan diagnosis dan terapi termasuk pelayanan kesehatan pada anak dengan epilepsi. Hal ini menimbulkan risiko anak dengan epilepsi tidak mendapatkan pelayanan kesehatan yang optimal yang dapat menyebabkan kambuhnya kejang dan penurunan kualitas hidup anak dengan epilepsi. Tujuan. Untuk mengetahui dampak COVID-19 terhadap pelayanan kesehatan anak dengan epilepsi dari perspektif orangtua atau pengasuh. Metode. Penelitian deskriptif dilakukan dengan metode potong lintang. Sampel diperoleh dengan metode survei wawancara langsung menggunakan kuesioner yang terdiri dari 23 pertanyaan pada bulan Februari-April 2022 kepada 252 orangtua/pengasuh yang berasal dari beberapa rumah sakit besar dan klinik di Jakarta. Hasil. Sebagian besar pasien tidak memiliki masalah perilaku (58,3%), tidak terdapat gangguan tidur (59,1%) serta tidak terdapat perubahan kepatuhan berobat (63,1%).Mayoritas pasien tidak pernah mendapat terapi diazepam rektal untuk mengatasi kekambuhan kejang (61,9%) selama pandemi. Masalah terbesar bagi orang tua dan pengasuh adalah rasa takut mengunjungi rumah sakit (27,4%%) dan lebih memilih untuk berkonsultasi secara langsung (86,9%) dibandingkan telekonsultasi atau tidak kontrol. Manfaat telekonsultasi bervariasi, antara lain, penurunan kebutuhan pergi keluar rumah (24,7%), hemat waktu (28,6%), dan menurunkan biaya transportasi (28,6%). Terdapat beberapa kekurangan telekonsultasi, yaitu miskomunikasi antara dokter dan pasien (39,4%). Kualitas pelayanan poliklinik neurologi masih cukup baik (68,3%), dengan pelayanan elektroensefalografi dan perawatan rehabilitasi selama pandemi masih berjalan seperti biasa (96% dan 46%). Sekitar 45,2% orang tua dan pengasuh setuju bahwa anak perlu divaksinasi, meskipun baru 22,2% dari seluruh subyek telah memperoleh vaksinasi. Kesimpulan. Pandemi COVID-19 tidak hanya berdampak pada manusia, melainkan juga pada sistem pelayanan kesehatan khususnya anak dengan epilepsi. Oleh karena itu, modifikasi pelayanan kesehatan selama pandemi COVID-19 merupakan kunci untuk mempertahankan kualitas pelayanan anak dengan epilepsi seperti, telekonsultasi.
... 4 Previous studies indicated that PWE perceived significant disruption in the quality and provision of health care services (31%-95%), increased stress and social isolation, and increased seizure frequency (6%-35%) during the COVID-19 pandemic. [7][8][9][10][11] However, the reported effect on seizure frequency in previous studies were based on patients' perceptions and binary (yes/no) surveys. Hence, the present study aimed to investigate the effect of the COVID-19 pandemic on seizure control status and changes in seizure frequency in PWE. ...
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Background: Previous studies have shown that patients with epilepsy (PWE) perceived significant disruption in the quality and provision of care due to the coronavirus disease 2019 (COVID-19) pandemic. The present study aimed to investigate the effect of this pandemic on seizure control status and changes in seizure frequency in PWE. Methods: A consecutive sample of adult PWE registered in the database of Shiraz Epilepsy Center (Shiraz, Iran) was included in the study. In July 2021, phone interviews were conducted with all selected patients. Information such as age, sex, last seizure, seizure type, and frequency during the 12 months before the study, and history of COVID-19 contraction was extracted. The seizure control status of the patients in 2019 (pre-pandemic) was compared with that during the COVID-19 pandemic. Data were analyzed using SPSS software with the Fisher's exact test and Pearson's Chi squared test. P<0.05 was considered statistically significant. Results: A total of 158 patients were included in the study, out of which 62 (39.2%) patients had a stable seizure control status, 47 (29.7%) had fewer seizures, and 50 (31.6%) had more seizures. Breakthrough seizures were reported by 32 (34.4%) patients. Seizure frequency increased in 18 (27.7%) and decreased in 46 (70.7%) patients. Conclusion: Overall, the COVID-19 pandemic has not been a major precipitating factor nor has it affected the seizure control status of PWE. In treated epilepsy, a fluctuating course with periods of seizure freedom followed by relapses is part of its natural history.
... Several observational studies have reported that during the COVID-19 pandemic, people with epilepsy (PWE) worsened their seizure control [6][7][8][9][10][11]. However, in most cases, this decompensation occurred because of circumstances derived from the pandemic ...
Background: We aimed to assess the risk of developing new-onset seizures or seizure decompensations in people with epilepsy (PWE) associated with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) vaccines. Methods: A retrospective observational study in a tertiary hospital was conducted. Clinical records of all patients attended because of seizures or epilepsy at outpatient clinics, emergency department, or admitted to our hospital from January to December 2021 were reviewed, including patients older than 16 years who received some dose of coronavirus disease 2019 (COVID-19) vaccines. Results: A total of 418 vaccinated PWE were analyzed: 6.2% presented an increase in seizure frequency and 1% reported different seizure types during the next month after vaccination. However, 61.5% had another possible cause for this decompensation. Having monthly seizures (1-3/month) was the only associated risk factor (OR 4.9, p < 0.001) while being seizure free > 1 year had a protective role (OR 0.36, p = 0.019). Patients with epileptic encephalopathies or a history of COVID-19 infection were not at increased risk of seizure decompensation. Besides this, 15 patients presented new-onset seizures within the first month post-vaccination, mean time from vaccination 15 ± 8 days, 67% after the second dose. Again, 53.3% had another possible trigger for seizures. Eight debuted with status epilepticus or cluster of seizures. Conclusions: A small proportion of PWE (6.2%) had an increase in seizure frequency after COVID-19 vaccination and 15 patients had new-onset seizures during the first month after vaccination, though another reason for seizure exacerbation was identified in 61.5% and 53.3%, respectively. Severe acute respiratory syndrome COVID-19 vaccines appear to have little impact on the generation or decompensation of seizures.
Purpose: To describe the impact of the COVID-19 pandemic on the health care and daily life of children and adolescents with epilepsy. Methods: This systematic review followed the preferred reporting items guidelines and was registered on the PROSPERO platform (CRD42021255931). The PECO (Patient, Exposure, Comparison, Outcome) framework criteria were as follows: people with epilepsy (0-18 years old); exposed to the COVID-19 pandemic; and outcomes, including epilepsy type, time of clinical diagnosis, seizure exacerbation, treatment and medications, need for emergency because of seizures, sleep, behavior, comorbidities and/or concerns, social and/or economic impact, insurance status, electronic device use, telemedicine, and distance learning. Literature searches for cross-sectional and longitudinal studies were conducted on Embase and PubMed. The methodological quality of identified studies was assessed using the Newcastle‒Ottawa Scale (NOS). Results: Data were extracted from 23 eligible out of 597 identified articles and included 31,673 patients. The mean NOS scores for cross-sectional study design was 3.84/10, and for longitudinal, it was 3.5/8 stars. Seizure exacerbations were reported in three studies, difficulties with access to anti-seizure medications in two, changes in dosage in five, and visit postponed or cancelation in five studies. Problems with sleep were highlighted in three, issues related to distance learning in two, an increased time spent on electronic devices in three, and increased behavioral problems in eight studies. Telemedicine, when available, was described as useful and supporting patient's needs. Conclusion: The pandemic affected the health care and lifestyle of young individuals with epilepsy. The main problems described revolved around seizure control, accessing anti-seizure medication, sleep and behavioral complains.
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Introduction: The aim of this study is to explore the ways that parents with children or adolescents with epilepsy (CAWE) experienced the restrictive measures, as well as the stressors and challenges that they had to face. Methods: We employed an experiential approach and fifteen Greek-speaking parents answered to an in-depth semi-structured interview, during the second lockdown period. Data were analyzed through the Thematic Analysis (TA). Results: The emerging themes were the challenges encountered in terms of medical monitoring, the "stay-home" impact on their everyday lives as a family, their psycho-emotional responses. More specifically, parents identified the irregular doctor appointments and their struggle to access the hospital services as the most important challenges. Moreover, parents reported that the "stay-home" impact has disrupted their children's daily routines among others. Finally, parents highlighted their emotional strain and worries experienced during the lockdown along with the positive changes that occurred.
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Aim: To identify the research on childhood disability service adaptations and their impact on children and young people with long-term disability during the COVID-19 pandemic. Method: A mapping review was undertaken. We searched the World Health Organization Global COVID-19 database using the search terms 'children', 'chronic/disabling conditions', and 'services/therapies'. Eligible papers reported service changes for children (0-19 years) with long-term disability in any geographical or clinical setting between 1st January 2020 and 26th January 2022. Papers were charted across the effective practice and organization of care taxonomy of health system interventions and were narratively synthesized; an interactive map was produced. Results: Reduction of face-to-face care and usual provision had a huge impact on children and families. Adoption of telehealth provided continuity for the care and management of some conditions. There was limited evidence of changes to mental health services, transitions of care, social care, or child-reported satisfaction or acceptability of service changes. Interpretation: The long-term impacts of service change during the pandemic need full evaluation. However, widespread disruption seems to have had a profound impact on child and carer health and well-being. Service recovery needs to be specific to the individual needs of children with a disability and their families. This should be done through coproduction to ensure that service changes meet needs and are accessible and equitable.
In order to quantitatively evaluate the electroencephalography (EEG) findings in patients (18 years old and older) with coronavirus disease 2019 (COVID-19), a systematical review of the sources and meta-analysis were performed. Publications with descrip- tive EEG in patients diagnosed with COVID-19 were systematically searched in PubMed databases until May 31, 2022. In analysis of the EEG data, American Clinical Neurophysiology Society’s terminology was used. Confidence intervals (CIs) for the general sample were computed using the Wilson score CI method, adjusting for continuity. The I2 statistic was used to measure heterogeneity of stud- ies. Of 295 identified publications, there were selected 121 studies from 19 count ries throughout the world. EEG data of 1916 patients (age from 18 to 97 years old; mean age 60 years old) were included in the meta-analysis. Normal EEG was recorded in 7.52 % (95 % CІ: 6.39–8.83). Abnormal back- ground activity (86.90 % (95 % CІ: 85.31–88.34), I2 = 41.23 %), first of all generalized slowing (75.22 % (95 % CІ: 73.23–77.11)), was the most prevalent finding. Generalized periodic and rhythmic EEG patterns were more prevailed than lateralized ones (31.05 % vs. 7.90 %). Epileptiform discharges were registered in 23.06 % (95 % CІ: 21.19–25.05) of patients, along with this status epilepticus (both anam- nestic and de novo) had 9.49 % (95 % CІ: 8.19–10.98), I2 = 58.82 %, including nonconvulsive status epi- lepticus in 3.59 % (95 % CІ: 2.81– 4.58), I2 = 33.35 %. Non-specificity of the EEG findings in COVID-19 sup- ports a multimodality of pathophysio- logical mechanisms of their origin. Further researches of EEG-abnormalities in COVID-19 in dynamics are necessary, whereas now the prevalence of these abnormalities is useful from the point of view of adequacy of a diagnostic minimum rather than risk prognosis for each patient.
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Our aim was to clarify the incidence and risk of acute symptomatic seizures in people with coronavirus disease 2019 (COVID‐19). This multicenter retrospective study enrolled people with COVID‐19 from 18 January to 18 February 2020 at 42 government‐designated hospitals in Hubei province, the epicenter of the epidemic in China; Sichuan province; and Chongqing municipality. Data were collected from medical records by 11 neurologists using a standard case report form. A total of 304 people were enrolled, of whom 108 had a severe condition. None in this cohort had a known history of epilepsy. Neither acute symptomatic seizures or status epilepticus were observed. Two people had seizure‐like symptoms during hospitalization due to acute stress reaction and hypocalcemia, Eighty‐four (27%) had brain insults or metabolic imbalances during the disease course known to increase the risk of seizures. There was no evidence suggesting an additional risk of acute symptomatic seizures in people with COVID‐19.Neither the virus or potential risk factors for seizures seem to be significant risks for the occurrence of acute symptomatic seizures in COVID‐19.
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Importance The outbreak of coronavirus disease 2019 (COVID-19) in Wuhan, China, is serious and has the potential to become an epidemic worldwide. Several studies have described typical clinical manifestations including fever, cough, diarrhea, and fatigue. However, to our knowledge, it has not been reported that patients with COVID-19 had any neurologic manifestations. Objective To study the neurologic manifestations of patients with COVID-19. Design, Setting, and Participants This is a retrospective, observational case series. Data were collected from January 16, 2020, to February 19, 2020, at 3 designated special care centers for COVID-19 (Main District, West Branch, and Tumor Center) of the Union Hospital of Huazhong University of Science and Technology in Wuhan, China. The study included 214 consecutive hospitalized patients with laboratory-confirmed diagnosis of severe acute respiratory syndrome coronavirus 2 infection. Main Outcomes and Measures Clinical data were extracted from electronic medical records, and data of all neurologic symptoms were checked by 2 trained neurologists. Neurologic manifestations fell into 3 categories: central nervous system manifestations (dizziness, headache, impaired consciousness, acute cerebrovascular disease, ataxia, and seizure), peripheral nervous system manifestations (taste impairment, smell impairment, vision impairment, and nerve pain), and skeletal muscular injury manifestations. Results Of 214 patients (mean [SD] age, 52.7 [15.5] years; 87 men [40.7%]) with COVID-19, 126 patients (58.9%) had nonsevere infection and 88 patients (41.1%) had severe infection according to their respiratory status. Overall, 78 patients (36.4%) had neurologic manifestations. Compared with patients with nonsevere infection, patients with severe infection were older, had more underlying disorders, especially hypertension, and showed fewer typical symptoms of COVID-19, such as fever and cough. Patients with more severe infection had neurologic manifestations, such as acute cerebrovascular diseases (5 [5.7%] vs 1 [0.8%]), impaired consciousness (13 [14.8%] vs 3 [2.4%]), and skeletal muscle injury (17 [19.3%] vs 6 [4.8%]). Conclusions and Relevance Patients with COVID-19 commonly have neurologic manifestations. During the epidemic period of COVID-19, when seeing patients with neurologic manifestations, clinicians should suspect severe acute respiratory syndrome coronavirus 2 infection as a differential diagnosis to avoid delayed diagnosis or misdiagnosis and lose the chance to treat and prevent further transmission.
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Aim: To test the hypothesis that higher seizure burden in Dravet syndrome is associated with increased comorbidities and lower quality of life (QoL) in a large cohort of patients with Dravet syndrome and their caregivers in Europe. Method: An extensive survey of caregivers of patients with Dravet syndrome on experiences of diagnosis, seizure burden, management, social and financial impact, and health services use was administered online in 10 languages. Results: The survey received 584 unique responses from caregivers of paediatric (83%) and adult (17%) patients with Dravet syndrome (aged <1-48y). Despite broadly following current treatment guidance, less than 10% of patients were seizure free in the previous 3 months. Nearly all (99.6%) patients aged 5 years or older experienced at least one or more motor, speech, learning, or behavioural impairment. High seizure frequency was related to more reports of emergency treatment, comorbidities, and a lower QoL (as measured by the standardized instrument EQ-5D-5L). If not diagnosed at the first instance, the majority (83%) of adults, but less than 20% of 6- to 11-year-olds were diagnosed after 4 or more years. Interpretation: Patients with Dravet syndrome with the highest current seizure frequency suffer from more comorbidities and have a lower QoL. Therefore, more effective antiepileptic treatments are needed. What this paper adds: The survey captured about 15% of all patients with Dravet syndrome in Europe. Less than 10% of patients had current seizure freedom. Patients with a high current seizure burden have more comorbidities and lower quality of life.
Viral infections have detrimental impacts on neurological functions, and even to cause severe neurological damage. Very recently, coronaviruses (CoV), especially severe acute respiratory syndrome CoV 2 (SARS-CoV-2), exhibit neurotropic properties and may also cause neurological diseases. It is reported that CoV can be found in the brain or cerebrospinal fluid. The pathobiology of these neuroinvasive viruses is still incompletely known, and it is therefore important to explore the impact of CoV infections on the nervous system. Here, we review the research into neurological complications in CoV infections and the possible mechanisms of damage to the nervous system.
Objective: To identify the epidemiological characteristics and transmission patterns of pediatric patients with the 2019 novel coronavirus disease (COVID-19) in China. Methods: Nationwide case series of 2135 pediatric patients with COVID-19 reported to the Chinese Center for Disease Control and Prevention from January 16, 2020, to February 8, 2020, were included. The epidemic curves were constructed by key dates of disease onset and case diagnosis. Onset-to-diagnosis curves were constructed by fitting a log-normal distribution to data on both onset and diagnosis dates. Results: There were 728 (34.1%) laboratory-confirmed cases and 1407 (65.9%) suspected cases. The median age of all patients was 7 years (interquartile range: 2-13 years), and 1208 case patients (56.6%) were boys. More than 90% of all patients had asymptomatic, mild, or moderate cases. The median time from illness onset to diagnoses was 2 days (range: 0-42 days). There was a rapid increase of disease at the early stage of the epidemic, and then there was a gradual and steady decrease. The disease rapidly spread from Hubei province to surrounding provinces over time. More children were infected in Hubei province than any other province. Conclusions: Children of all ages appeared susceptible to COVID-19, and there was no significant sex difference. Although clinical manifestations of children's COVID-19 cases were generally less severe than those of adult patients, young children, particularly infants, were vulnerable to infection. The distribution of children's COVID-19 cases varied with time and space, and most of the cases were concentrated in Hubei province and surrounding areas. Furthermore, this study provides strong evidence of human-to-human transmission.
Epidemiology of COVID-19 among children in China
  • Y Dong
  • X Mo
  • Y Hu
  • X Qi
  • F Jiang
  • Z Jiang
Dong Y, Mo X, Hu Y, Qi X, Jiang F, Jiang Z, et al. Epidemiology of COVID-19 among children in China [published online ahead of print March 16, 2020].
The untold toll-the pandemic's effects on patients without Covid-19 [published online ahead of print March 17, 2020]
  • Rosenbaum
Epidemiology of COVID-19 among children in China [published online ahead of print March 16, 2020]
  • Dong