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

DOI:10.1111/epi.16537
Authors:
Ángel Aledo-Serrano at Vithas Madrid Neuroscience Intitute
Ángel Aledo-Serrano
  • Vithas Madrid Neuroscience Intitute
Ana Mingorance
Ana Mingorance
Ana Mingorance
  • This person is not on ResearchGate, or hasn't claimed this research yet.
Adolfo Jiménez-Huete
Adolfo Jiménez-Huete
Adolfo Jiménez-Huete
  • This person is not on ResearchGate, or hasn't claimed this research yet.
Rafael Toledano at Hospital Ruber Internacional
Rafael Toledano
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Abstract and Figures

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.
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1
wileyonlinelibrary.com/journal/epi
Received: 23 April 2020
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Accepted: 26 April 2020
DOI: 10.1111/epi.16537
LETTER
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
(P<.001).
© 2020 International League Against Epilepsy
2
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LETTER
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
caregiver.
ACKNOWLEDGMENTS
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.
CONFLICT OF INTEREST
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.
ÁngelAledo-Serrano1,2
AnaMingorance3
AdolfoJiménez-Huete1
RafaelToledano1,4
IreneGarcía-Morales1,5
CarlaAnciones1
AntonioGil-Nagel1
1Epilepsy Unit, Department of Neurology, Ruber
Internacional Hospital, Madrid, Spain
2Epilepsy Unit, Department of Neuroscience,
Corachan Clinic, Barcelona, Spain
Email: aaledo@neurologiaclinica.es
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
Stable
epilepsy
Epilepsy
worsening P
Stable
behavior
Behavioral
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.
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3
LETTER
5Epilepsy Unit, Department of Neurology, Clinico San
Carlos University Hospital, Madrid, Spain
Correspondence
Angel Aledo-Serrano
Email: aaledo@neurologiaclinica.es
ORCID
Ángel Aledo-Serrano https://orcid.org/0000-0003-4889-3365
Rafael Toledano https://orcid.org/0000-0002-9387-1088
Antonio Gil-Nagel https://orcid.org/0000-0003-4515-0793
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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.
org/10.1111/epi.16537
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... 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 https://doi.org/10.1016/j.yebeh.2022.108808 ...
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Full-text available
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.
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To the issue of prevalence of EEG abnormalities in coronavirus disease 2019: a meta-analysis of EEG data of 1916 patients diagnosed with COVID-19
Article
  • Aug 2022
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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New‐onset acute symptomatic seizure and risk factors in Corona Virus Disease 2019: A Retrospective Multicenter Study
Article
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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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Neurologic Manifestations of Hospitalized Patients With Coronavirus Disease 2019 in Wuhan, China
Article
Full-text available
  • Apr 2020
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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Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort survey
Article
Full-text available
  • Oct 2017
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.
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Nervous system involvement after infection with COVID-19 and other coronaviruses
Article
  • Mar 2020
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.
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Epidemiological Characteristics of 2143 Pediatric Patients With 2019 Coronavirus Disease in China
Article
  • Mar 2020
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.
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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]
  • Jan 2020
  • Rosenbaum
Epidemiology of COVID-19 among children in China [published online ahead of print March 16, 2020]
  • Jan 2020
  • Dong