Children With Epilepsy Research Articles

Anxiety and Depression among Family Caregivers of Children with Epilepsy in Burkina Faso

AbstractBackground Epilepsy is a common and chronic neurological disorder influencing children's cognitive and behavioral performance. Primary caregivers of children with epilepsy (CWE) report high levels of depression and anxiety.Patients and Methods We performed a cross-sectional study on caregivers of CWE in the Neurology Department of Yalgado Ouédraogo University Teaching Hospital from May 7, 2020 to August 18, 2020. The State-Trait Anxiety Inventory scale and Beck Depression Inventory scale were assessed to screen anxiety and depression.Results One hundred caregivers with a mean age of 37.75 ± 10.69 years were included in the study. The majority of them were female gender (73%), aged <40 years (59%), and residing in rural areas (79%). Most of caregivers were female gender (73%) and the mothers of children (67%). The majority of CWE were boys (55%), having generalized epilepsy (55%) and epilepsy duration less than 6 years (74%). Anxiety was observed in 56%, depression in 27%, and both anxiety and depression in 23% of caregivers. The factors influencing anxiety among caregivers were female gender (p = 0.04), being patient's mothers (p = 0.04), and caring male patients (p = 0.04). The factors associated with caregiver's depression were being married (p = 0.03) and caring patients with five seizures per year (p = 0.04).Conclusion Our study revealed very high rates of anxiety and depressive disorder among caregivers of CWE in Burkina Faso.

Clinical and socio-demographic factors associated with electroencephalographic abnormalities in children with epilepsy

Electroencephalography (EEG) makes critical contribution to the management of epilepsies. Few studies have examined the clinical and socio-demographic factors that are likely to predict finding an abnormal or epileptiform EEG in children with epilepsy (CWE). Knowledge of clinical variables and socio demographic factors that determine EEG abnormalities may inform careful selection of children for EEG and improve the cost-effectiveness of this investigation. Therefore, this study was carried out to assess the relationship between the occurrence of EEG abnormalities and certain factors such as age, gender, clinical neurologic state, seizure type, anti-epileptic drug therapy, activation procedure such as sleep and etiology of epilepsy in children who had EEG in Owerri, Nigeria. The clinical and EEG records of children who had EEG at a tertiary referral center over a period of two years were retrospectively reviewed. Relevant data including demographics, clinical neurologic state, seizure type, EEG findings were extracted. Statistical analysis was used to determine association between categorical variables. The variables noted to be significantly associated with abnormal EEG recordings were the presence of abnormal neurologic findings (p=0.020) and etiology of epilepsy (p=0.045). There were no significant association between abnormal EEG findings and age (p=0.680), gender (p=0.802) and seizure types (p=0.157). The clinical neurological state and etiology of epilepsy in children were significantly associated with the occurrence of abnormalities and yield of interictal scalp EEG. Children with epilepsy who are neurologically abnormal or have multiple etiological factors could be prioritized in EEG appointments in resource-poor settings. Further research in children with epilepsy is needed to confirm these findings.

A Qualitative Investigation Into What Parents Want From an Online Behavioural Sleep Intervention for Children With Epilepsy.

Many of the same sleep problems seen in typically developing (TD) children are frequently experienced by children with epilepsy (CWE). Behavioural sleep interventions (BSIs) are commonly and successfully used to treat these sleep problems in TD children and in some neurodevelopmental disorder populations. Therefore, BSIs should be effective in CWE, however, there are special seizure-related considerations for CWE and their parents which may be salient to consider in any future BSI development for this group. The current study sought to identify, from parents, if there were special considerations for the content and delivery of an online BSI for parents of CWE. Semi-structured interviews were conducted with nine mothers of CWE and thematic analysis was conducted on the interview data. Ten themes were apparent which represented what parents wanted from any online BSI for CWE. Parents wanted (i) other parents’ views and real-life experiences to be included, (ii) recognition of how changes over time may influence the appropriateness of using various sleep-management options, (iii) to be presented with a range of sleep management options from which they could select, (iv) personalised information and suggestions for behaviour-change options, (v) help to address child anxiety around sleep, (vi) for the advice and behaviour-change options to be practical, (vii) general educational information about sleep and the relationship between sleep and epilepsy, (viii) for parental worries and concerns to be acknowledged, (ix) to receive help, support, and reassurance around children’s sleep; and (x) to include the child in the intervention. It was clear that any online BSI would require specific adaptations and additions (to content and delivery format) to best meet the needs of parents of CWE. It is hoped that having identified what parents want from on online BSI for CWE will allow these factors to be acknowledged in future intervention development, with the intention to optimise parental engagement and intervention effectiveness. Practical suggestions for how these aspects could be integrated into any online BSI are suggested.

Development and Evaluation of the CASTLE Trial Online Sleep Intervention for Parents of Children with Epilepsy.

Introduction: Many of the sleep problems experienced by children with epilepsy (CWE) have the same behavioural basis as common sleep problems seen in typically developing (TD) children. Behavioural sleep interventions (BSIs) are widely used to treat these sleep problems in TD children and are hypothesised to be effective for CWE. However, specific considerations need to be addressed and incorporated into a BSI for CWE to ensure the intervention is tailored to this population's needs. This paper details developing and tailoring an online BSI for parents of CWE, to be used in the CASTLE (Changing Agendas on Sleep, Treatment and Learning in Epilepsy) Sleep-E clinical trial.Method: In phase one, two existing theory-driven paediatric BSIs were adapted into a novel online behavioural sleep intervention (CASTLE Online Sleep Intervention or COSI) which specifically incorporated the needs and requirements reported by nine parents of CWE. Scoping their needs included conducting interviews with three CWE so that they could contribute to the overall intervention content. In phase two, six of these parents evaluated COSI, reviewing and feeding back on COSI until parental approval for content and functionality was achieved.Results: In phase one, a range of adaptations was made to the content and presentation of standardised intervention material to acknowledge and emphasise the key seizure-specific issues to ensure COSI best met parents of CWE's needs. Adaptations included embedding parent and child experiences in the intervention, including particular information requested by parents, such as the links between sleep and seizures and managing child and parental anxieties around sleep, as well as developing functionality to personalise the delivery of content. In phase two, parents confirmed that they found the final version of COSI to be functional and appropriate (after one round of review) for use by parents of CWE and that 100% would recommend it to other families who have CWE.Discussion: It is hoped that the use of evidence-based BSIs, adapted to consider salient epilepsy-specific factors, will increase parent-engagement, COSI's relevance for this particular patient group and overall efficacy in improving sleep in CWE. The effectiveness of COSI will be tested in the CASTLE Sleep-E clinical trial (https://castlestudy.org.uk/).

Teachers’ experiences of managing children with epilepsy in school: A qualitative study

BackgroundSchool is the second most important environment for children second to the family. An increasing number of children with epilepsy (CWE) are able to go back to school to continue to study after treatment. In school, CWE can be involved in studies and activities, which is conducive to their growth. However, CWE have to face more barriers than other children in school, such as cognitive impairment, poor attendance, school absenteeism, and learning disability. What is more, even if CWE have been taking antiepileptic medicines, they still have a risk of seizure. Therefore, it is important to ensure the safety of CWE in the school. Teachers play a significant part in managing CWE in school, so we aimed to deeply explore the experiences of school teachers in managing CWE during school. MethodPurposive sampling was used to recruit teachers (n = 17) who cared for children with epilepsy in their class. Semi-structured interviews were used to access qualitative data. Framework analysis was used to analyze qualitative data. ResultFive major themes emerged after analyzing: the recognition of epilepsy, the attitude to children with epilepsy, the barriers to communicate with parents about epilepsy, the reaction to a seizure, and the need for training. ConclusionThe findings of this qualitative study reported teachers’ knowledge of and attitude toward epilepsy, the barriers for them to communicate with parents, the reaction to seizure, and the need for training. Although teachers know little about epilepsy, they have a positive attitude toward CWE. There are many obstacles in terms of the communication between teachers and parents. Parents’ cover-ups and teachers’ lack of professional training will put teachers and CWE at risk. In view of the fact that teachers and parents are not professionals, it is necessary for hospitals to play a coordinating role between the two.

A six-year longitudinal study of neurocognitive problems in children with epilepsy

IntroductionThis study describes the specific neuropsychological abnormalities among children with epilepsy (CH-E) living in Georgia. MethodsA cohort of CH-E and children without epilepsy (CH-NoE), aged 6–13 years, admitted to the epilepsy center of the Institute of Neurology and Neuropsychology from 1st January 2010 to 31st December 2015, was selected and investigated with a structured protocol. Neurological/epileptological assessments were made and neuropsychological testing was done on all study subjects. ResultsAbnormalities in praxis, verbal functions, verbal learning, visual-spatial matching, visual-motor ability, and fine motor skills, working memory, and phonological memory span were often revealed in CH-E as compared to CH-NoE. Early age of seizure onset, epilepsy duration, and anti-seizure medication (ASM) use, in combination with brain structural abnormalities on neuroimaging, and structural etiology were independent predictors of impaired functioning in various neuropsychological domains. DiscussionMore than half of children with epilepsy have a variety of cognitive impairments, which may increase with ASM therapy, especially when the cause of seizures is structural damage to the brain. Therefore, in the process of diagnosing epilepsy, evaluation of cognitive functions should become an integral part to ensure effective management of the disorder.

Brief video enhances teacher trainees’ knowledge of epilepsy

ObjectiveRelative to the general population, children with epilepsy (CWE) demonstrate difficulties in aspects of cognition and mental health. Previous studies have found that teachers have poor knowledge about epilepsy, which may lead to inadequate management of CWE’s comorbidities and seizures, potentially impacting CWE’s school performance, social development, and safety. The current study aimed to evaluate whether a brief training program improves teachers’ epilepsy knowledge. MethodParticipants included pre-service teachers enrolled in the Faculty of Education at Western University (London, Ontario, Canada). There were no exclusion criteria. Pre-service teachers completed a questionnaire evaluating their experiences and knowledge of epilepsy prior to, and two weeks following, the training program. The training program consisted of a 10.5-min video and booklet that described the characteristics of seizures, seizure first aid, and the cognitive, psychological, and social consequences of epilepsy. ResultsPre-service teachers’ knowledge about epilepsy, seizure safety, and common comorbidities associated with epilepsy significantly improved after participating in the training program. Furthermore, pre-service teachers indicated greater self-reported knowledge about epilepsy and greater preparedness to handle a seizure in the classroom. ConclusionThe results of the current study demonstrated that a brief, cost-effective training program significantly enhances teachers’ knowledge about epilepsy, seizure safety, and the comorbidities associated with epilepsy. Enhancing teachers’ knowledge about epilepsy has the potential to improve children’s academic and social success in school.

Prevalence and factors associated with behavioural problems in children with epilepsy attending Mulago hospital, Uganda: A cross-sectional study

Purpose: To determine the prevalence of behavioural problems and the associated factors in children with epilepsy (CWE). Methods: This was a cross-sectional study conducted at Mulago National Referral Hospital, Kampala, Uganda, from December 2019 to May 2020. A total of 300 CWE aged 6 to 17 years were consecutively enrolled and assessed for behavioural problems using the Strengths and Difficulties Questionnaire. We obtained data on the associated factors by using pretested structured questionnaires, the Rosenberg Self-Esteem Scale, the Kilifi Stigma Scale of Epilepsy, the Morisky medication adherence scale and the Tumaini Child Health Screener for childhood disabilities. Simple logistic regression and multivariate analysis was done to determine the associated factors while adjusting for the presence of neurodevelopmental disorders and childhood disabilities. Results: Behavioural problems were detected in 108/300 CWE (36%) with more internalizing (28%) than externalizing (21%) behaviour scores noted. The odds of behavioural problems increased with the presence of co-morbid neurodevelopmental disorders or childhood disabilities (cOR: 5.42, p-value < 0.001). Factors associated with occurrence of behavioural problems were high stigma perception (aOR: 4.06, p-value < 0.001) and being seizure-free in the last six months (aOR: 3.43, p-value =0.031) while being an adolescent (aOR: 0.33, p=0.001) lessened the risk. Conclusions: Behavioural problems occur in more than a third of CWE. They are more in the internalizing domain than in the externalizing domain. Their odds increase with high perceived stigma and in the first six months of seizure control.

Health-related quality of life in children and adolescents with epilepsy in Enugu: Need for targeted intervention.

Epilepsy, a chronic brain disorder, predisposes children to low Health-Related Quality of Life (HRQOL). This study aimed at assessing the HRQOL in Nigerian children with epilepsy and compare it with that in healthy children. A cross-sectional study of 166 children with epilepsy (CWE), aged 5-18 years on anti-epileptic drugs (AEDs) for at least 6 months and 166 age and sex-matched apparently healthy children was conducted. A generic version of the Pediatric Quality of Life (Peds QoL version 4) scale was used to assess HRQOL. There were significant differences in Quality-of-Life mean scores in the domains of social functioning, psychosocial combination, and psychosocial plus physical activities between cases and controls. The school function scores of <50, indicating low QOL, were significantly more (Chi square = 35.37) (P = 0.0001) among the cases (32.5%) compared to the controls (6.3%). Similarly, low quality of life in the psychosocial combination were observed significantly (P_ = 0.042) more among the cases (12.7%) compared to the controls (6.3%). Low quality of life in emotional feeling domain were noted significantly (Chi square = 12.9) (P = 0.0002) more in subjects aged between 8 and 12 (20%). QOL scores of below 50 in the social function domain were observed significantly (Chi square = 6.49) (P = 0.039) more in subjects aged between 5 and 7 years (44.8%). There was significant gender difference in Quality-of-life index in school functioning domain in subjects. (Chi Square = 6.49) (P value = 0.039). Children in the upper social class scored higher in the social functioning domain, and social class was significantly associated with scores in the social domain of functioning. (F = 3.75 and P = 0.03). QOL scores below 50 in the emotional domain were significantly more among subjects aged 8-12 years/13-18 year, s and QOL scores of <50 in the school function domain were significantly more in subjects aged 5-7 years. (P = 0.0002) (P = 0.039), respectively. HRQOL is reduced in CWE in all domains of Peds QoL. Significant predictors of reduced HRQOL include age, gender, and socioeconomic class. Beyond seizure control, epilepsy management should be oriented towards ensuring the optimal health-related quality of life.

Attitudes Toward Epilepsy Among Parents of Children With Epilepsy in Southern China.

Purpose: To evaluate the attitudes toward epilepsy among parents of children with epilepsy (CWE) in China and identify some related factors for future interventions for parents to offer more social support for CWE.Method: The Chinese Public Attitudes Toward Epilepsy (CPATE) scale was administered to 234 parents of CWE and 203 parents of normal children in Xiangya hospital during 2019–2020.Results: The cumulative score of the parents of CWE (26.427 ± 6.688) was significantly lower than that of the normal children group (32.330 ± 7.234, p < 0.001). Subanalysis showed more positive attitudes among parents of CWE than the control group (p < 0.001) toward education (4.765 ± 1.985 vs. 6.621 ± 2.419), social life (6.556 ± 2.456 vs. 8.010 ± 2.683), marriage (9.586 ± 2.675 vs. 11.025 ± 2.900), and employment (3.876 ± 1.364 vs. 4.5123 ± 1.283). The attitudes toward epilepsy among parents of CWE with seizures in public (27.16 ± 6.66) or during sleep (27.10 ± 6.38) were more negative than those without (25.35 ± 6.62 and 25.08 ± 7.10, respectively) (p < 0.05). In addition, female and low income were negatively related to parents' attitudes toward epilepsy.Conclusions: More active policy guidance and adequate social support should be given to parents of children with seizures in public or during sleep to instruct their children to form a positive perception about epilepsy, which is expected to have a positive impact on their social abilities in the future.

MEMORY STATUS AMONG CHILDREN WITH EPILEPSY

Objective: To study the status of visual and verbal memory status among children with epilepsy and effects on schooling. Methods:This descriptive cross-sectional study enrolled children aged 5 to 15 years who have been diagnosed to have epilepsy and has been seizure free during last one month. Enrolled children (81) were evaluated by using two sub tests selected from the National Institute of Mental Health and Neuro Sciences(NIMHANS) Neuropsychological Battery for Children, Rey’s Auditory Verbal Learning test and Memory for Designs test, for verbal and visual memory status respectively and the child was graded on the basis of the standard scores. Schooling details were obtained by questioners to care taker. Results: Memory impairment (MI) was identied in 50 (61.7%) Children with Epilepsy (CWE) (predominantly verbal memory impairment). 20 (25%) CWE were not attending age appropriate class. Among these 20 CWE, 17(85%) children had memory impairment. p: 0.01. There were 25 CWE performing poorly, among them 22(88%) children had memory impairment. p &lt;0.0024. A total of 8 children were school dropouts and all 8 had MI (100%).Conclusions:MI was found to be very common in CWE. MI among CWE was found to negatively inuence age appropriate schooling and school performance. Early screening and appropriate support may improve the outcome.

Poor adherence to sleep and physical activity guidelines among children with epilepsy

ObjectiveTo assess physical activity and sleep rates in a cohort of children with epilepsy (CWE) and determine if there is a relationship between physical activity and sleep time. MethodsChildren aged 8–14 years with a diagnosis of epilepsy and at least one seizure in the past 12 months were monitored via a wrist-worn activity tracker for 16 weeks, to objectively measure daily physical activity, as assessed by step counts, and sleep time. Adherence to physical activity (≥12,000 steps/day) and sleep recommendations (≥9 h for children aged 8–12 years, or ≥8 h for children aged 13–15 years) was determined. To predict daily activity or nightly sleep, a series of multivariable models incorporating age, sex, day-type (all combinations of weekday or weekend and summer holiday or school), participant (as a random effect), daily physical activity (for models predicting sleep), nightly sleep (for models predicting physical activity), and autoregressive terms of previous sleep or physical activity were constructed, and the best-performing models were selected with Akaike information criterion analysis. ResultsTwenty-two children with mild to moderate epilepsy were recruited (54.5% female, median (IQR) age 11 (10, 13) years) and monitored for 16 weeks. They met the recommended level of physical activity only in 38.0% (21.7%, 59.4%), and sleep in 49.1% (30.0%, 68.5%) of days. They met both physical activity and sleep guidelines on the same day in only 17.8% (95% CI 7.1%, 38.0%). There was no association between meeting the recommended levels of daily physical activity and sleep time (p = 0.86, ρ = 0.03). In the best-performing model, age, sex, day type, and participant explained 28.9% of the variance in daily physical activity, with no additional insight provided by measures of sleep time. Age, sex, day type, participant, and daily physical activity explained 17.3% of the variance in nightly sleep time, with a statistically discernable but small association between physical activity and sleep time (1.79 ± 0.53, p = 0.001). ConclusionOur cohort of children with mild to moderate epilepsy showed poor adherence to sleep and physical activity guidelines. There was no clinically relevant association between daily physical activity and sleep among these children who were similarly active to healthy peers. Future studies should assess the effect of increased sleep hygiene and physical activity on overall well-being and seizure control in CWE.

Economic burden of epilepsy in children: A population-based matched cohort study in Canada.

The economic burden of childhood epilepsy to the health care system remains poorly understood. This study aimed to determine phase-specific and cumulative long-term health care costs in children with epilepsy (CWE) from the health care payer perspective. This cohort study utilized linked health administrative databases in Ontario, Canada. Incident childhood epilepsy cases were identified from January 1, 2003 to June 30, 2017. CWE were matched to children without epilepsy (CWOE) on age, sex, rurality, socioeconomic status, and comorbidities, and assigned prediagnosis, initial, ongoing, and final care phase based on clinical trajectory. Phase-specific, 1-year and 5-year cumulative health care costs, attributable costs of epilepsy, and distribution of costs across different ages were evaluated. A total of 24411 CWE were matched to CWOE. The costs were higher for prediagnosis and initial care than ongoing care in CWE. Hospitalization was the main cost component. The costs of prediagnosis, initial, and ongoing care were higher in CWE than CWOE, with the attributable costs at $490 (95% confidence interval [CI] = $352-$616), $1322 (95% CI = $1247-$1402), and $305 (95% CI = $276-$333) per 30 patient-days, respectively. Final care costs were lower in CWE than CWOE, with attributable costs at -$2515 (95% CI = -$6288 to $961) per 30 patient-days. One-year and 5-year cumulative costs were higher in CWE ($14776 [95% CI = $13994-$15546] and $39261 [95% CI = $37132-$41293], respectively) than CWOE ($6152 [95% CI = $5587-$6768] and $15598 [95% CI = $14291-$17006], respectively). The total health care costs were highest in the first year of life in CWE for prediagnosis, initial, and ongoing care. Health care costs varied along the continuum of epilepsy care, and were mainly driven by hospitalization costs. The findings identified avenues for remediation, such as enhancing care around the time of epilepsy diagnosis and better care coordination for epilepsy and comorbidities, to reduce hospitalization costs and the economic burden of epilepsy care.

A live-online mindfulness-based intervention for children living with epilepsy and their families: protocol for a randomized controlled trial of Making Mindfulness Matter\xa9

BackgroundEpilepsy extends far beyond seizures; up to 80% of children with epilepsy (CWE) may have comorbid cognitive or mental health problems, and up to 50% of parents of CWE are at risk for major depression. Past research has also shown that family environment has a greater influence on children’s and parents’ health-related quality of life (HRQOL) and mental health than epilepsy-related factors. There is a pressing need for low-cost, innovative interventions to improve HRQOL and mental health for CWE and their parents. The aim of this randomized controlled trial (RCT) is to evaluate whether an interactive online mindfulness-based intervention program, Making Mindfulness Matter (M3), can be feasibly implemented and whether it positively affects CWE’s and parents’ HRQOL and mental health (specifically, stress, behavioral, depressive, and anxiety symptoms).MethodsThis parallel RCT was planned to recruit 100 child-parent dyads to be randomized 1:1 to the 8-week intervention or waitlist control and followed over 20 weeks. The intervention, M3, will be delivered online and separately to parents and children (ages 4–10 years) in groups of 4–8 by non-clinician staff of a local community epilepsy agency. The intervention incorporates mindful awareness, social-emotional learning skills, and positive psychology. It is modeled after the validated school-based MindUP program and adapted for provision online and to include a parent component.DiscussionThis RCT will determine whether this online mindfulness-based intervention is feasible and effective for CWE and their parents. The proposed intervention may be an ideal vector to significantly improve HRQOL and mental health for CWE and their parents given its low cost and implementation by community epilepsy agencies.Trial registrationClinicalTrials.gov NCT04020484. Registered on July 16, 2019.

Evaluation of anxiety, depression, and sleep quality among parents of children with epilepsy in Southern China

PurposeThe purpose of the study was to evaluate sleep quality in the parents of children with epilepsy (CWE) as well as their symptoms of anxiety and depression in Southern China. MethodA structured questionnaire, comprised of The State–Trait Anxiety Inventory (STAI), Center for Epidemiologic Studies Depression Scale (CES-D), and the Pittsburgh Sleep Quality Index (PSQI), was administered to parents of CWE (n = 234) in Xiangya Hospital and parents of healthy children (n = 230) during 2019–2020. ResultsThe scores (Mean ± SD) of State Anxiety Inventory (S-AI) and Trait Anxiety Inventory (T-AI) among parents of CWE were 51.850 ± 11.380 and 48.201 ± 9.526, respectively, which were significantly higher than those of control group (37.172 ± 8.047 and 37.478 ± 7.314, respectively) (p < 0.001). Compared with 10.84% in parents of healthy children, 23.51% of parents of CWE had symptoms of depression (p < 0.001). The mean score of total PSQI among parents of CWE (6.944 ± 3.814) was statistically higher than that of parents of healthy children (5.039 ± 3.390) (p < 0.001). Moreover, anxiety and depression subscores among parents of infants with epilepsy were significantly higher than in other groups. The T-AI and CES-D could explain 43.9% of the variance (R2 = 0.444, F = 92.215, p < 0.001) on the PSQI. ConclusionsOur study showed more severe symptoms of anxiety and depression as well as poorer sleep quality among parents of CWE, especially in the infants group. In light of this information, more attention should be paid to early identification and intervention of symptoms of anxiety and depression in susceptible parents who are the main caregivers of their CWE.

Epilepsy and school in the Middle East and North Africa (MENA) region: The current situation, challenges, and solutions

Education is a human right that plays a key role in social and economic development. Children having active epilepsy may not be properly schooled in ordinary school structures. Students with epilepsy (SWE) are often faced with academic barriers.The lack of information about the current status of special education for SWE obliged the researchers to try to describe the existing reality of the special education practices in the Middle East and North Africa (MENA) region.We disseminated a simple self-administered questionnaire via email to main healthcare professionals involved in epilepsy care in the MENA region, and we also did a literature search on the PubMed, Google Scholar, and Embase engines.We ranked the countries in terms of their educational system. The 1st group contains the most advanced educational system, including specialized schools for SWE. The 2nd group contains an educational system with specialized but less structured schools. The 3rd group includes countries using integrated classes or classes mixing many children with cognitive disabilities. The 4th group includes countries with ordinary classes for SWE, and finally, the 5th group with no schooling for children with epilepsy (CWE).This study indicates that 60% of the countries in the MENA region belong to the 3rd group; there is only one country in each of the first two groups.This work highlights the need to develop structured environments for schooling for SWE in the MENA region.

Impact of caregiver burden on health-related quality of life and family functioning of carers of children with epilepsy at the Charlotte Maxeke Johannesburg Academic Hospital, South Africa

Background. The impact of caring for a child with a chronic disease on caregivers and their family functioning contributes to the child’s adaptation to the disease. Objectives. To determine the impact of caregiver burden on the health-related quality of life (HRQOL) and family functioning of carers of children with epilepsy (CWE), and to determine factors associated with a high impact of caregiver burden. Method. A cross-sectional study was conducted among primary caregivers of CWE attending the Charlotte Maxeke Johannesburg Academic Hospital, South Africa. Participants had been involved in childcare for at least 6 months before study enrolment and all gave informed consent. Data regarding sociodemographic and epilepsy-related variables were obtained from questionnaires, including the 36-item family impact module of the Pediatric Quality of Life assessment tool. Scores in the lower quartile were considered indicative of a negative impact on HRQOL and poor family functioning. Results. Participants identified as experiencing a high impact of paediatric epilepsy care reported raw scores ≤31.3 for both caregiver burden and family functioning. The family functioning score correlated strongly with the caregivers’ HRQOL score ( p =0.78; p&lt;0.001). Multivariate analysis identified a low level of education among caregivers and a high seizure frequency in patients as independent predictors of caregiver burden associated with a negative impact. Conclusion. Our findings suggest that the burden of caregiving in paediatric epilepsy among our study population impacts negatively on family functioning. The burden of care was associated with a low level of caregiver education and a high seizure frequency in their children.

Awareness of sudden unexpected death in epilepsy among parents of children with epilepsy in a tertiary center

ObjectiveSudden unexpected death in epilepsy (SUDEP) is the second leading neurological cause of potential years of lifelost after stroke. Despite growing numbers of studies on social aspects of epilepsy, there is a paucity of research on the awareness of SUDEP among the parents of children with epilepsy (CWE), especially in Turkey. In this study, we aimed to evaluate the knowledge of parents of the CWE regarding SUDEP in the tertiary setting. Material and methodsA total of 146 parents (108 female) aged 19 to 55 years (median age:34) of CWE were included at Marmara University, School of Medicine, Department of Pediatric Neurology outpatient clinic between May 2018 and September 2018. A total of 30 multiple-choice questions and a written survey were administered, which consisted of three sections. In the first section, the sociodemographics of parents and CWE were questioned. In the second section, the severity of epilepsy was evaluated. In the third section, the knowledge level and awareness of parents of CWE were assessed. ResultsOf 146 parents, only 16.6% previously heard about SUDEP, while 45% of them heard from their relatives. The presence of prior knowledge of SUDEP was associated with the presence of prolonged postictal confusion and longer duration of epilepsy (p < 0.05). Ninety-seven (66%) parents desired to be informed about SUDEP, while 76 (54.7%) of them agreed that this information should be given at the time of diagnosis. The degree of anxiety in parents regarding death of epilepsy-related causes was significantly related with prolonged postictal confusion (p < 0.001) and using three or more antiepileptic drugs (p = 0.005). ConclusionOur data suggest that knowledge about SUDEP among parents with CWE found inadequate in Turkey. There should be much effort to inform parents and caregivers in epilepsy clinics on SUDEP, which may help to reduce the associated risk factors.

A study of the significance of photoparoxysmal responses and spontaneous epileptiform discharges in the EEG in childhood epilepsy

AimIn clinical practice, there is a prevailing notion that photosensitivity mostly occurs in children with epilepsy (CWE) with idiopathic generalized epilepsy. We investigated the distribution of epilepsy types and etiology in photosensitive children and the associations with specific clinical and electroencephalogram (EEG) variables. MethodsIn this retrospective cohort study, clinical data were acquired from all children that showed photosensitivity during systematic intermittent photic stimulation (IPS), over a 10-year interval at a tertiary level Children's Hospital, Winnipeg. Patient demographics, EEG findings, and clinical data and symptoms during IPS were abstracted. Classification of diagnoses using the International League Against Epilepsy (ILAE) 2017 guidelines was done by an expert panel. ResultsSeventy-eight photosensitive children were identified. Forty (51.3%) had generalized epilepsy (idiopathic: 27, structural: 2, other: 11) compared with 19 (24.4%) focal (idiopathic: 1, structural: 2, other: 16), 8 (10.3%) combined focal and generalized (structural: 4, other: 4), and 11 (14.1%) unknown epilepsy (other: 11); (χ2 (3) = 32.1, p = .000).Self-sustaining or outlasting photoparoxysmal responses (PPRs) occurred in association with all epilepsy types; however, the EEGs of focal CWE without treatment comprised almost solely of PPRs which outlasted the stimulus (8/10), in contrast to only 8/17 of focal CWE with treatment and to 13/26 of generalized epilepsy without treatment.Most frequency intervals in individual patients were less under treatment: a decrease in standardized photosensitivity range (SPR) was seen in 5 CWE, an increase in 2, and no change in 1 during treatment. Both CWE with focal and generalized epilepsy showed abnormal activity on EEG during hyperventilation (40% vs 65.7%). Thirteen out of 14 CWE with clinical signs during IPS had independent spontaneous epileptiform discharges (SEDs) in the EEG recording. ConclusionPhotosensitivity occurs in all types of epilepsy rather than in idiopathic generalized epilepsy alone. Surprisingly, there is a tendency for focal epilepsy to be associated with self-sustaining PPRs, especially when no treatment is used. Treatment tends to make the PPR more self-limiting and decrease the SPR. There is a tendency that clinical signs during IPS occur in EEGs in individuals with SEDs.

Pattern of Comorbid Headache Among Children with Epilepsy Treated for Neurocysticercosis

The present cross-sectional study was designed to describe the pattern of comorbid headache among children with epilepsy (CWE) secondary to neurocysticercosis (NCC). Children aged 6 to 14 y (n = 70) already diagnosed with neurocysticercosis on a minimum follow-up of six months were consecutively enroled in the studyover a period of four months. Majority of them were boys [41 (58%)] with a mean (SD) age of 9.8 (3.2) y. Headache was reported by 24 (34.2%) children. Only one child among them qualified the diagnosis of migraine as per International Classification of Headache Disorders (ICHD)-3 criteria. The proportion of children with and without headache was comparable among those with active or inactive lesion [p = 0.21]; single or multiple lesions [p = 0.78]; and stages of NCC [p = 0.23]. The proportion of children with headache was similar irrespective of the activity and the number of NCC lesions. This alerts the pediatrician to evaluate the headache and consider migraine among CWE treated for NCC.