Abstract, originally published in Epilepsy & Behavior

Introduction: Psychogenic nonepileptic events (PNEE) are a type of Functional Neurological Symptom Disorder that present with events that appear epileptic but are not associated with abnormal electrical activity in the brain. In response to the global COVID-19 pandemic, our PNEE clinic switched to a telemedicine format, and we present here our experience with providing care to children and adolescents with PNEE in this format.

Methods: The multidisciplinary clinic shifted to a telemedicine platform in March 2020 with the same joint provider format. Follow-up phone calls are completed at one and three months following the visit. Data are presented with descriptive statistics. Referral volume and outcomes data are compared to historical patients, including rates of diagnosis acceptance, linkage to counseling, and change in event frequency.

Results: Twenty-three patients were scheduled to be seen via telemedicine or hybrid visits from March through June, twenty completed their visits. Sixteen (70%) were reached for follow-up at one month. Of those reached, twelve (75%) accepted the diagnosis, eight (50%) were linked with counseling, and fourteen (88%) with improvement in event frequency. Of the sixteen reached at three months, eleven (69%) had accepted the diagnosis, ten (63%) were linked with counseling, and all but two reported improvement in event frequency. In comparison, the previously published results showed 3-month rates of 75% of patients accepting the diagnosis, 76% linked with counseling, and 75% with improvement in event frequency.

Conclusions: Video telemedicine visits are a feasible and effective way to provide care for children and adolescents with psychogenic non-epileptic events. At 3 months, patients seen by telemedicine had similar acceptance rates, decreased connection to counseling, and increased rate of improvement in event frequency. This study suggests telemedicine may have some benefits over traditional clinic visits, such as improved show rates and access to clinic; so should be considered a reasonable alternative to in-person visits.

Summary, originally published in Epilepsia Open

Objective: To describe the development of the Pediatric Epilepsy Outcome-Informatics Project (PEOIP) at Alberta Children’s Hospital (ACH), which was created to provide standardized, point of care data entry; near-time data analysis and availability of outcomes dashboards as a baseline on which to pursue Quality Improvement.

Methods: Stakeholders involved in the PEOIP met weekly to determine the most important outcomes for patients diagnosed with epilepsy, create a standardized electronic note with defined fields (patient demographics, seizure and syndrome type and frequency and specific outcomes (seizure type and frequency, adverse effects, emergency department visits, hospitalization) and care pathways for clinical decision support. These were embedded in the electronic health record from which the fields were extracted into a data display platform that provided patient and population level dashboards updated every 36 hours. Provider satisfaction and family experience surveys were performed to assess the impact of the standardized electronic note.

Results: In the last 5 years, 3,245 unique patients involving 13, 831 encounters had prospective, longitudinal, standardized epilepsy data accrued via point of care data entry into an electronic note as part of routine clinical care. A provider satisfaction survey of the small number of users involved indicated that the vast majority believed that the note makes documentation more efficient. A family experience survey indicated that being provided with the note was considered ‘valuable’ or ‘really valuable’ by 86% of respondents and facilitated communication with family members, school and advocacy organizations.

Significance: The Pediatric Epilepsy Outcomes-Informatics Project serves as a proof of principle that information obtained as part of routine clinical care can be collected in a prospective, standardized, efficient manner and be used to construct filterable, process/outcomes dashboards, updated in near time (36 hours). This information will provide the necessary baseline data on which a multiple of QI projects to improve meaningful outcomes for children with epilepsy will be based.

Summary, originally published by University of Birmingham

Children with epilepsy sleep poorly compared to healthy children, and are more likely to experience disruptions such as night terrors, sleep walking or sleep disordered breathing, according to a new study.

A team at the University of Birmingham’s Centre for Human Brain Health analyzed 19 published studies on sleep and epilepsy in children and adolescents to try to better understand and articulate the links between them.

Their findings, published in Sleep Medicine Reviews, highlight the significantly poorer sleep experienced by children and adolescents with epilepsy, and present a strong argument for screening children for sleep problems as an integral part of diagnosis and management of the condition.

Lead author Alice Winsor explains: “We know that sleep and epilepsy have a bidirectional relationship: Epilepsy has an impact on sleep, because of seizures waking children up in the night, for example. At the same time, disrupted sleep can increase the likelihood of seizures. Despite the available research, however, sleep is not routinely evaluated by clinicians during the diagnosis and care of this condition.”

Abstract, originally published in Epilepsia

Objective: To study the epilepsy syndromes among the severe epilepsies of infancy and assess their incidence, etiologies, and outcomes.

Methods: A population-based cohort study was undertaken of severe epilepsies with onset before age 18 months in Victoria, Australia. Two epileptologists reviewed clinical features, seizure videos, and electroencephalograms to diagnose International League Against Epilepsy epilepsy syndromes. Incidence, etiologies, and outcomes at age 2 years were determined.

Results: Seventy-three of 114 (64%) infants fulfilled diagnostic criteria for epilepsy syndromes at presentation, and 16 (14%) had “variants” of epilepsy syndromes in which there was one missing or different feature, or where all classical features had not yet emerged. West syndrome (WS) and “WS-like” epilepsy (infantile spasms without hypsarrhythmia or modified hypsarrhythmia) were the most common syndromes, with a combined incidence of 32.7/100 000 live births/year. The incidence of epilepsy of infancy with migrating focal seizures (EIMFS) was 4.5/100 000 and of early infantile epileptic encephalopathy (EIEE) was 3.6/100 000. Structural etiologies were common in “WS-like” epilepsy (100%), unifocal epilepsy (83%), and WS (39%), whereas single gene disorders predominated in EIMFS, EIEE, and Dravet syndrome. Eighteen (16%) infants died before age 2 years. Development was delayed or borderline in 85 of 96 (89%) survivors, being severe–profound in 40 of 96 (42%). All infants with EIEE or EIMFS had severe–profound delay or were deceased, but only 19 of 64 (30%) infants with WS, “WS-like,” or “unifocal epilepsy” had severe–profound delay, and only two of 64 (3%) were deceased.

Significance: Three quarters of severe epilepsies of infancy could be assigned an epilepsy syndrome or “variant syndrome” at presentation. In this era of genomic testing and advanced brain imaging, diagnosing epilepsy syndromes at presentation remains clinically useful for guiding etiologic investigation, initial treatment, and prognostication.

Abstract, originally published in Children

Cerebral palsy (CP) is a frequent cause of childhood disability often associated with a complex group of disorders, including epilepsy, which is reported to impact approximately 40% of affected individuals. This retrospective study involved a group of children affected by CP, some of whom also had comorbid epilepsy. The aim of this study was to report our experience of analyzing, in particular, (a) some of the clinical aspects of the different type of CP, and (b) the relationship between the clinical data of children affected by CP plus epilepsy and each type of CP.

Methods: This retrospective single-center study was performed with 93 children admitted to the Pediatric Department of the University of Catania, Italy, affected by CP and distinguished according to the type of motor clinical presentation, with 46 showing epileptic seizures, compared to a control group of 136 children affected by epilepsy without other neurologic disorders.

Results: Among the 93 CP children, 25 (27%) had spastic quadriplegia (plus one patient with dystonic quadriplegia), 39 (42%) had spastic hemiplegia, 11 (12%) had spastic diplegia (plus two with ataxia and one with dyskinetic CP), and 14 (15%) did not have a well-defined type of CP. The frequency of epilepsy was higher in affected CP children who showed major motor dysfunction (GMFCS IV-V types). As regards the 46 children with CP plus epilepsy, compared to the group of the control, the age of epilepsy onset was found to be statistically significant: 21 ± 35.1 months vs. 67 ± 39.7.

Conclusions: Epilepsy represents one of the most frequent comorbidities of cerebral palsy. In children with CP, particular attention should be paid to the early identification and treatment of comorbid epilepsy.