Pediatric Epileptologists Research Articles

Challenges and Prospects in Epilepsy Monitoring Units: A Comprehensive Review of Logistic Barriers.

Epilepsy is one of the most common neurological diseases with a prevalence ranging from 0.5% to 2% in different sittings. The World Health Organization (WHO) estimated that nearly 80% of this burden is borne by resource-poor countries where even conventional electroencephalogram (EEG) coverage is dramatically short. Video EEG monitoring applied for days as conducted in epilepsy monitoring units (EMUs) is aimed at seizure localization, anti-seizure medication (ASM) adjustment, or epilepsy surgery evaluation and planning.However, the EEG approach in EMUs has its obstacles. The present article is aimed to concentrate on the logistic challenges of EMUs, discussing existing data and limitations and offering suggestions for future planning to enhance the utilization of existing technology. Shortages of adult and pediatric epileptologists, qualified nurses, as well as EEG technologists have been reported in different countries. Moreover, injuries and falls, psychosis, status epilepticus, and unexpected death have been stated to be the most frequent safety issues in EMUs. Enhancements to mitigate logistical and healthcare system-related barriers in EMUs include the implementation of large cohort studies and the utilization of artificial intelligence (AI) for the identification and categorization of specific risks among EMU admissions. The establishment of EMUs andtheir associated challenges and barriers are best acknowledged through discussions and dialogue with various stakeholders.

Understanding Health Care Provider Burnout When Caring for Patients With Refractory Epilepsy in the United States.

Among health care providers (HCPs), neurologists have one of the highest rates of burnout in the United States, compromising the quality and accessibility of patient care. Patients with refractory epilepsy are especially challenging to treat. This study aims to understand the burnout level in neurologists treating patients with refractory epilepsy and identify key contributing factors. US board-certified pediatric/adult neurologists who devote ≥50% of their time to clinical practice and treat ≥10 unique patients with refractory epilepsy annually were invited to take a noninterventional quantitative survey, designed to capture key elements of the HCP's background, burnout level, current practice, burden domains, and satisfaction with current antiseizure medications (ASMs). Burnout in 3 domains (emotional exhaustion, depersonalization, and personal accomplishment) was assessed by the validated Maslach Burnout Inventory-Human Services Survey. From March 11, 2022, to April 10, 2022, a total of 138 neurology-specialist HCPs participated in the survey, divided between adult epileptologists (n = 44), adult neurologists (n = 41), pediatric epileptologists (n = 36), and pediatric neurologists (n = 17). Of participating HCPs, 61% experienced at least some burnout (≥1 of 3 burnout domains categorized as high), and 4% experienced high burnout (3 of 3 burnout domains categorized as high). High burnout levels were driven by high pediatric and inpatient caseloads and unexpected pediatric patient reluctance to transition to adult care. HCPs with high burnout had a higher yearly caseload of patients with refractory epilepsy. Most HCPs (approximately 90%) indicated that patients with refractory epilepsy were more difficult to manage than those with nonrefractory epilepsy. The proportion of HCPs satisfied or extremely satisfied with ASMs was lower for patients with refractory epilepsy (20%) than that for patients with nonrefractory epilepsy (73%). Dissatisfaction was mostly due to workload and latency of the insurance approval process, out-of-pocket costs, and poor efficacy, safety, and tolerability. For 32% of HCPs, stopping practicing or moving to another practice within 5 years was probable or very probable. Some burnout is common among HCPs who treat patients with refractory epilepsy. However, management of refractory epilepsy is challenging, and satisfaction with available ASMs is low. Thus, addressing these contributing factors may help to alleviate HCP burnout.

Psychiatric and behavioral concerns of perampanel with concomitant levetiracetam in children with epilepsy

PurposePerampanel (PER) is expanding the therapeutic scope for pediatric epilepsy owing to its efficacy and favorable safety profile. However, concerns about psychiatric and behavioral adverse events (PBAEs) in combination therapy with levetiracetam (LEV) continue to contribute to hesitation in its prescription. We investigated the risk profiles for PBAEs when adding PER to pediatric epilepsy treatment and analyzed the differences according to the presence of concomitant LEV. MethodsWe retrospectively reviewed the medical records of children aged 4–18 years with epilepsy who were prescribed PER as adjunctive therapy from March 2016 to February 2023. We compared the occurrence and management of PBAEs between the PER without LEV and PER with LEV groups. The risk factors for PBAEs were also analyzed. ResultsNinety-four patients (53 boys and 41 girls) were included in this study. The median age of total patients at the time of adding PER was 14.9 years (12.3–16.4 years), and 53 patients (56.4 %) had concomitant LEV. Forty-seven PBAEs occurred in 34 patients (36.2 %), with no significant differences depending on whether concomitant LEV is present or not. The most common PBAEs were aggression (14.9 %), irritability (9.6 %), affect lability (7.4 %), and acute psychosis (6.4 %). PBAEs occurred at a lower dosage (2–6 mg/day) in 70.6 % of the patients. In addition, 73.5 % of patients with PBAEs continued PER treatment by follow-up observation or by reducing the PER dosage. No risk factors, such as the presence of concomitant LEV or lamotrigine, any comorbid conditions, higher PER dosage (8–12 mg/day), two or more concomitant anti-seizure medications, and younger age (<13 years) at PER add-on, showed significant associations. ConclusionWhen expanding the use of anti-seizure medications in pediatric patients, real-world evidence on safety issues is crucial for pediatric epileptologists. We confirmed that combination therapy with PER and LEV did not increase the risk profile of PBAEs.

Clearance for Driving in Genetic Generalized Epilepsy.

A key aspect of management of genetic generalized epilepsy involves assessing seizure control and deciding suitability for driving motor vehicles. We surveyed child neurologists and pediatric epileptologists on key questions that practitioners should ask prior to providing clearance for driving. The results showed a wide variability of practice among responders. We propose a likely appropriate process necessary to determine seizure control.

Interrater reliability of interictal EEG waveforms in Lennox-Gastaut Syndrome.

Identification of EEG waveforms is critical for diagnosing Lennox-Gastaut Syndrome (LGS) but is complicated by the progressive nature of the disease. Here, we assess the interrater reliability (IRR) among pediatric epileptologists for classifying EEG waveforms associated with LGS. A novel automated algorithm was used to objectively identify epochs of EEG with transient high power, which were termed events of interest (EOIs). The algorithm was applied to EEG from 20 LGS subjects and 20 healthy controls during NREM sleep, and 1350 EOIs were identified. Three raters independently reviewed the EOIs within isolated 15-second EEG segments in a randomized, blinded fashion. For each EOI, the raters assigned a waveform label (spike and slow wave, generalized paroxysmal fast activity, seizure, spindle, vertex, muscle, artifact, nothing, or other) and indicated the perceived subject type (LGS or control). Labeling of subject type had 85% accuracy across all EOIs and an IRR of κ =0.790, suggesting that brief segments of EEG containing high-power waveforms can be reliably classified as pathological or normal. Waveform labels were less consistent, with κ =0.558, and the results were highly variable for different categories of waveforms. Label mismatches typically occurred when one reviewer selected "nothing," suggesting that reviewers had different thresholds for applying named labels. Classification of EEG waveforms associated with LGS has weak IRR, due in part to varying thresholds applied during visual review. Computational methods to objectively define EEG biomarkers of LGS may improve IRR and aid clinical decision-making.

Creating a Sustainable Model for Epilepsy Transition with Objective Outcome Measurements (P14-2.004)

<h3>Objective:</h3> We have created a dedicated epilepsy transition program with pediatric and adult epileptologists to facilitate the transfer of adolescent patients from pediatric to adult management and support their budding independence. <h3>Background:</h3> Approximately 33–50% of children with epilepsy will require continued management of their seizures into adulthood^1,2. Transition from pediatric to adult epilepsy represents a challenging time for young patients. Problems can arise including disengagement, poor compliance, increased comorbidities and mortality, and cognitive and behavioral issues^1,3–5. A transition program may alleviate some of these concerns^3,4,6–11. Different from transfer-of-care, transition-of-care is a process preparing patients and their families for a change in their care^{3,6,8,9,12–14}. <h3>Design/Methods:</h3> Working with billing experts, administration, IT, and clinicians we created two sustainable epilepsy clinic models in April 2021: the Transition Clinic (TC) and the multidisciplinary Staging Transition for Every Patient (STEP) program. We created an algorithm with point of contact to streamline referrals from pediatric to adult epilepsy clinics. Patients through the TC receive epilepsy care and guidance to medical independence with dual pediatric and adult inputs. TC patients have EpiTRAQ scores tracked at subsequent visits. <h3>Results:</h3> Since their launch, 75 new patients were seen through the TC and 46 through STEP with 63 direct referrals from UAB Children’s. No patients were lost to follow up. All TC patients showed improvement of EpiTAQ scores with each visit <h3>Conclusions:</h3> We set about to first create a smooth transfer of care and transition into adult epilepsy for adolescents. There is a cited call in the literature for a transition program to report objective outcomes, which is the next step of this project. Feedback from referred providers and patients will be evaluated. Primary and secondary outcomes will be compared to age matched controls to determine whether our program has improved transition readiness for patients transferring to adult epilepsy care and independent epilepsy management. <b>Disclosure:</b> Miss Edwards has nothing to disclose. Dr. Lalor has nothing to disclose. Dr. Vo has nothing to disclose.

The state of pediatric tuberous sclerosis complex epilepsy care: Results from a national survey.

Epilepsy associated with tuberous sclerosis complex (TSC) can be challenging to treat and is associated with significant disease burden. Our objective was to better understand the state of epilepsy care of TSC amongst pediatric neurologists in Canada, identify gaps in care and determine whether access to a dedicated TSC clinic has an impact on epilepsy management. A survey was developed after a literature review and discussion amongst two pediatric epileptologists and one nurse practitioner with expertise in TSC about the state of epilepsy care of TSC patients in Canada. Canadian pediatric neurologists were asked to participate in sharing their experiences via an anonymous web-based survey through the Canadian League Against Epilepsy (CLAE) and the Canadian Neurological Sciences Federation (CNSF). Fifty-seven responses were received. Access to a dedicated TSC clinic was reported by 25% (n=14). Sixty percent (n=34) reported performing serial EEG monitoring in infants with TSC and 57% (n=33) started prophylactic antiseizure therapy when EEG abnormalities were detected, regardless of whether there was access to a TSC clinic (P=.06 and P=.29, respectively). While 52% (n=29) did not feel comfortable prescribing mTORi for epilepsy, 65% (n=36) indicated they would consider it with additional training. Epilepsy surgery was offered in 93% (n=13) of centers with a dedicated TSC clinic but only 45% of centers without a TSC clinic (n=19) (P=.002). Our findings demonstrate the variability in neurological care of pediatric patients with TSC as it pertains to epilepsy management. There is a need for the establishment of epilepsy practice guidelines and a national network to support clinical practice, research, and education.

Epilepsy Milestones 2.0: An updated framework for assessing epilepsy fellowships and fellows

Accreditation Council for Graduate Medical Education (ACGME)-accredited epilepsy fellowships, like other ACGME accredited training programs, use Milestones to establish learning objectives and to evaluate how well trainees are achieving these goals. The ACGME began developing the second iteration of the Milestones 6 years ago, and these are now being adapted to all specialties. Here, we describe the process by which Epilepsy Milestones 2.0 were developed and summarize them. A work group of nine board-certified, adult and pediatric epileptologists reviewed Epilepsy Milestones 1.0 and revised them using a modified Delphi approach. The new Milestones share structural changes with all other specialties, including a clearer stepwise progression in professional development and the harmonized Milestones that address competencies common to all medical fields. Much of the epilepsy-specific content remains the same, although a major addition is a set of Milestones focused on reading and interpreting electroencephalograms (EEGs), which the old Milestones lacked. Epilepsy Milestones 2.0 includes a Supplemental Guide to help program directors implement the new Milestones. Together, Epilepsy Milestones 2.0 and the Supplemental Guide recognize advances in epilepsy, including stereo-EEG, neurostimulation, genetics, and safety in epilepsy monitoring units. Epilepsy Milestones 2.0 address the shortcomings of the old Milestones and should facilitate the assessment of epilepsy fellowships and fellows by program directors, faculty, and fellows themselves.

The Growing Need for a Transitional Age Program for Adolescents with Epilepsy in Korea

Epilepsy is one of the most common chronic neurological conditions in adolescents and young adults. The transition from the pediatric to the adult health care system can be a major challenge for most adolescents with epilepsy and their families. An unsuccessful transition can have a detrimental effect on them as individuals, as well as on their families. Generally speaking, pediatric epileptologists often feel uncomfortable when they deal with adolescents and young adults with epilepsy due to unfamiliarity with the common psychosocial problems and diseases of adulthood, while adult epileptologists are unfamiliar with childhood-specific epilepsy syndromes and, in many cases, patients’ previous history. Therefore, a transitional age program (TAP) is imperative to remediate the care gap and facilitate a smooth transition from the pediatric to the adult care system. A TAP is a set of processes that cover all the areas of the transition, including an assessment of transition readiness, rethinking the diagnosis using currently available tests, a reevaluation for neurobehavioral comorbidities, education, setting goals, and providing recommendations. Furthermore, the TAP should start as early as possible and must be comprehensive, flexible, and patient-centered. The cost-benefit effectiveness of TAPs requiring a multidisciplinary team has not been fully evaluated, but TAPs are becoming ubiquitous, especially in developed countries. I think that TAPs must be implemented in practical ways for adolescents and young adults with epilepsy at tertiary epilepsy centers as soon as possible in Korea. Key words: Epilepsy; Transitional care; Adolescent.

Pediatric and adult epileptologist perspectives and experiences of pediatric to adult epilepsy care transition: “Saying goodbye and opening a door.”

We aimed to describe perspectives of transition and transfer of adolescents and young adults with childhood-onset epilepsy from pediatric to adult care from the viewpoints of both pediatric and adult epileptologists. Telephone semi-structured interviews with pediatric (n = 15) and adult (n = 11) epileptologists at leading U.S. epilepsy centers were used to collect data about the transition process. Interviews were audio-recorded, transcribed, systematically coded using thematic analysis by two independent researchers, and subsequently checked for agreement during regular meetings. Participants were on average 46 years old (SD = 7.4), 50% male, 91% Non-Hispanic and 85% Caucasian; all had completed a formal epilepsy or clinical neurophysiology fellowship (mean = 11 years since terminal training) and were employed at a comprehensive epilepsy center. Three interrelated themes regarding epileptologists’ perspectives of epilepsy transition and transfer of care were evident: (1) the process is unnatural and disruptive, (2) clinicians make the best of challenges, and (3) the epilepsy transition process includes a spectrum of broad needs some of which are unique to epilepsy care while others are common to other chronic diseases. Despite challenges, epilepsy clinicians spontaneously expressed stress, empathy, and commitment to providing the best possible care.

Proposal to optimize evaluation and treatment of Febrile infection-related epilepsy syndrome (FIRES): A Report from FIRES workshop.

Febrile infection‐related epilepsy syndrome (FIRES) is a rare catastrophic epileptic encephalopathy that presents suddenly in otherwise normal children and young adults causing significant neurological disability, chronic epilepsy, and high rates of mortality. To suggest a therapy protocol to improve outcome of FIRES, workshops were held in conjunction with American Epilepsy Society annual meeting between 2017 and 2019. An international group of pediatric epileptologists, pediatric neurointensivists, rheumatologists and basic scientists with interest and expertise in FIRES convened to propose an algorithm for a standardized approach to the diagnosis and treatment of FIRES. The broad differential for refractory status epilepticus (RSE) should include FIRES, to allow empiric therapies to be started early in the clinical course. FIRES should be considered in all previously healthy patients older than two years of age who present with explosive onset of seizures rapidly progressing to RSE, following a febrile illness in the preceding two weeks. Once FIRES is suspected, early administrations of ketogenic diet and anakinra (the IL‐1 receptor antagonist that blocks biologic activity of IL‐1β) are recommended.

Association of Child Neurology (AOCN) — Indian Epilepsy Society (IES) Consensus Guidelines for the Diagnosis and Management of West Syndrome

West syndrome is one of the commonest causes of epilepsy in infants and young children and is a significant contributor to neurodevelopmental morbidity. Multiple regimens for treatment are in use. An expert group consisting of pediatric neurologists and epileptologists was constituted. Experts were divided into focus groups and had interacted on telephone and e-mail regarding their group recommendations, and developed a consensus. The evidence was reviewed, and for areas where the evidence was not certain, the Delphi consensus method was adopted. The final guidelines were circulated to all experts for approval. Diagnosis should be based on clinical recognition (history/home video recordings) of spasms and presence of hypsarrhythmia or its variants on electroencephalography. A magnetic resonance imaging of the brain is the preferred neuroimaging modality. Other investigations such as genetic and metabolic testing should be planned as per clinico-radiological findings. Hormonal therapy (adrenocorticotropic hormone or oral steroids) should be preferred for cases other than tuberous sclerosis complex and vigabatrin should be the first choice for tuberous sclerosis complex. Both ACTH and high dose prednisolone have reasonably similar efficacy and adverse effect profile for West syndrome. The choice depends on the preference of the treating physician and the family, based on factors of cost, availability of infrastructure and personnel for daily intramuscular injections, and monitoring side effects. Second line treatment options include anti-epileptic drugs (vigabatrin, sodium valproate, topiramate, zonisamide, nitrazepam and clobazam), ketogenic diet and epilepsy surgery.

The epileptology of Aicardi-Goutières syndrome: electro-clinical-radiological findings

ObjectiveAlthough epileptic seizures occur in approximately a quarter of patients with Aicardi-Goutières syndrome (AGS), their phenotypic and electrophysiological characterization remains elusive. The aim of our study was to characterize epilepsy phenotypes and electroencephalographic (EEG) patterns in AGS and look for possible correlations with clinical, genetic and neuroradiological features. MethodsWe selected patients with an established AGS diagnosis followed at three Italian reference centers. Medical records, EEGs and MRI/CT findings were reviewed. EEGs were independently and blindly reviewed by three board-certified pediatric epileptologists. Chi square and Fisher’s exact tests were used to test associations between epilepsy and EEG feature categories and clinical, radiological and genetic variables. ResultsTwenty-seven patients were enrolled. We reviewed 63 EEGs and at least one brain MRI scan per patient. Epilepsy, mainly in the form of epileptic spasms and focal seizures, was present in 37 % of the cohort; mean age at epilepsy onset was 9.5 months (range 1–36). The presence of epilepsy was associated with calcification severity (p = 0.016) and startle reactions (p = 0.05). Organization of EEG electrical activity appeared to be disrupted or markedly disrupted in 73 % of cases. Severe EEG disorganization correlated with microcephaly (p < 0.001) and highly abnormal MRI T2-weighted signal intensity in white matter (p = 0.022).Physiological organization of the EEG was found to be better preserved during sleep (87 %) than wakefulness (38 %). Focal slow activity was recorded in more than one third of cases. Fast activity, either diffuse or with frontal location, was more frequent in the awake state (78 %) than in sleep (50 %). Interictal epileptiform discharges (IEDs) were present in 33 % of awake and 45 % of sleep recordings. IEDs during sleep were associated with a higher risk of a epileptic seizures (p = 0.008). SignificanceThe hallmarks of EEG recordings in AGS were found to be: disruption of electrical organization, the presence of focal slow and fast activity, and the presence of IEDs, both in patients with and in those without epilepsy. The associations between epilepsy and calcification and between EEG pattern and the finding of a highly abnormal white matter T2 signal intensity suggest a common anatomical correlate. However, the complex anatomical-electroclinical basis of AGS-related epilepsy still requires further elucidation.

Epilepsy surveillance in normocephalic children with and without prenatal Zika virus exposure

Children with Congenital Zika Syndrome and microcephaly are at high risk for epilepsy; however, the risk is unclear in normocephalic children with prenatal Zika virus (ZIKV) exposure [Exposed Children (EC)]. In this prospective cohort study, we performed epilepsy screening in normocephalic EC alongside a parallel group of normocephalic unexposed children [Unexposed Children (UC)]. We compared the incidence rate of epilepsy among EC and UC at one year of life to global incidence rates. Pregnant women were recruited from public health centers during the ZIKV outbreak in Grenada, West Indies and assessed for prior ZIKV infection using a plasmonic-gold platform that measures IgG antibodies in serum. Normocephalic children born to mothers with positive ZIKV results during pregnancy were classified as EC and those born to mothers with negative ZIKV results during and after pregnancy were classified as UC. Epilepsy screening procedures included a pediatric epilepsy screening questionnaire and video electroencephalography (vEEG). vEEG was collected using a multi-channel microEEG® system for a minimum of 20 minutes along with video recording of participant behavior time-locked to the EEG. vEEGs were interpreted independently by two pediatric epileptologists, who were blinded to ZIKV status, via telemedicine platform. Positive screening cases were referred to a local pediatrician for an epilepsy diagnostic evaluation. Epilepsy screens were positive in 2/71 EC (IR: 0.028; 95% CI: 0.003–0.098) and 0/71 UC. In both epilepsy-positive cases, questionnaire responses and interictal vEEGs were consistent with focal, rather than generalized, seizures. Both children met criteria for a clinical diagnosis of epilepsy and good seizure control was achieved with carbamazepine. Our results indicate that epilepsy rates are modestly elevated in EC. Given our small sample size, results should be considered preliminary. They support the use of epilepsy screening procedures in larger epidemiological studies of children with congenital ZIKV exposure, even in the absence of microcephaly, and provide guidance for conducting epilepsy surveillance in resource limited settings.

Emergency implementation of telemedicine for epilepsy in Spain: Results of a survey during SARS-CoV-2 pandemic

Teleneurology in Spain had not been implemented so far in clinical practice, except in urgent patients with stroke. Telemedicine was hardly used in epilepsy, and patients and neurologists usually preferred onsite visits. Our goal was to study impressions of adult and pediatric epileptologists about the use of telemedicine after emergent implementation during the new coronavirus 2019 (COVID-19) pandemic. MethodsAn online survey was sent to the members of the Spanish Epilepsy Society and the members of the Epilepsy Study Group of the Catalan Neurological Society, inquiring about different aspects of telemedicine in epilepsy during the pandemic lockdown. ResultsA total of 66 neurologists responded, mostly adult neurologists (80.3%), the majority with a monographic epilepsy clinic (4 out of 5). Of all respondents, 59.1% reported to attend more than 20 patients with epilepsy (PWE) a week. During the pandemic, respondents handled their epilepsy clinics mainly with telephone calls (88%); only 4.5% used videoconference. Changes in antiseizure medications were performed less frequently than during onsite visits by 66.6% of the epileptologists. Scales were not administered during these visits, and certain types of information such as sudden expected unrelated death in epilepsy (SUDEP) were felt to be more appropriate to discuss in person. More than 4 out of 5 of the neurologists (84.8%) stated that they would be open to perform some telematic visits in the future. ConclusionsIn Spain, emergent implantation of teleneurology has shown to be appropriate for the care of many PWE. Technical improvements, extended use of videoconference and patient selection may improve results and patient and physician satisfaction.

Sexual and Reproductive Health in Adolescent and Young Adult Women with Epilepsy: a Qualitative Study of Pediatric Neurologists and Epileptologists (10)

Sexual and Reproductive Health in Adolescent and Young Adult Women with Epilepsy: a Qualitative Study of Pediatric Neurologists and Epileptologists (10)

Intracranial Electroencephalography in Pediatric Severe Traumatic Brain Injury.

Electroencephalography is used in neurocritical care for detection of seizures and assessment of cortical function. Due to limited resolution from scalp electroencephalography, important abnormalities may not be readily detectable. We aimed to identify whether intracranial electroencephalography allows for improved methods of monitoring cortical function in children with severe traumatic brain injury. This is a retrospective cohort study from a prospectively collected clinical database. We investigated the occurrence rate of epileptiform abnormalities detected on intracranial electroencephalography when compared with scalp electroencephalography. We also investigated the strength of association of quantitative electroencephalographic parameters and cerebral perfusion pressure between both intracranial and scalp electroencephalography. This is a single-institution study performed in the Phoenix Children's Hospital PICU. Eleven children with severe traumatic brain injury requiring invasive neuromonitoring underwent implantation of a six-contact intracranial electrode as well as continuous surface electroencephalography. None. Visual detection of epileptiform abnormalities was performed by pediatric epileptologists. Association of intracranial and scalp electroencephalography total power, alpha percentage, and alpha-delta power ratio to cerebral perfusion pressure was performed using univariate dynamic structural equations modeling. Demographic data were assessed by retrospective analysis. Intracranial and scalp electroencephalography was performed in 11 children. Three of 11 children had observed epileptiform abnormalities on intracranial electroencephalography. Two patients had epileptiform abnormalities identified exclusively on intracranial electroencephalography, and one patient had seizures initiating on intracranial electroencephalography before arising on scalp electroencephalography. Identification of epileptiform abnormalities was associated with subsequent identification of stroke or malignant cerebral edema. We observed statistically significant positive associations between intracranial alpha-delta power ratio to cerebral perfusion pressure in nine of 11 patients with increased strength of association on intracranial compared with scalp recordings. These findings suggest that intracranial electroencephalography may be useful for detection of secondary insult development in children with traumatic brain injury.

Sexual and reproductive healthcare for adolescent and young adult women with epilepsy: A qualitative study of pediatric neurologists and epileptologists

ObjectiveThe objective of this study was to explore the attitudes and practices of pediatric neurologists and epileptologists regarding sexual and reproductive healthcare for adolescent and young adult women with epilepsy (WWE). BackgroundAdolescent and young adult WWE have unique sexual and reproductive healthcare needs, including counseling on teratogenesis, folic acid, and interactions between contraception and antiseizure medications. There are no prior studies regarding sexual and reproductive healthcare practices of pediatric neurologists or epileptologists. Design/methodsIndividual semi-structured interviews were conducted with pediatric neurologists and epileptologists regarding their attitudes, practices, and experiences with sexual and reproductive healthcare for adolescent and young adult WWE. Interviews were audio-recorded and transcribed verbatim. Qualitative analysis was conducted using a thematic analysis approach. ResultsSix child neurologists and 10 epileptologists (44% male) participated. Major themes included the following: (1) Sexual and reproductive healthcare is important for adolescent WWE, and neurologists have a key role in providing this care. (2) Sexual and reproductive healthcare should be comanaged with a primary care provider or women's health provider although neurologists have significant concerns regarding comanagement. (3) There is wide variability in sexual and reproductive healthcare practice among pediatric neurologists and epileptologists. Important subthemes included parent education and differences in sexual and reproductive healthcare practices for women with intellectual disabilities. (4) Many systemic and interpersonal barriers exist to delivering sexual and reproductive healthcare to adolescent and young adult WWE. Important barriers included limited time; provider, patient, or family discomfort; and lack of necessary knowledge or expertise. (5) Providers desire standardization of sexual and reproductive healthcare for adolescent WWE along with patient and provider education. ConclusionThis is the first study to assess attitudes and practices of pediatric neurologists and epileptologists regarding sexual and reproductive healthcare for adolescent and young adult WWE. Our findings suggest that there is a need for development of improved systems for sexual and reproductive healthcare delivery and comanagement for adolescent and young adult WWE. Providers identified many barriers and facilitators that might serve as the basis for interventions to improve care.

New-onset seizure survey of epilepsy centers in the United States

ObjectivesChildren presenting with new-onset seizures have variable access to resources and may not receive timely and adequate treatment. Some may experience adverse consequences when not evaluated in a timely manner by appropriate medical providers. Consequences can be especially severe for children under the age of two and for children who have psychiatric, cognitive, and behavioral comorbidities. There are no published data on how children with new-onset seizure are evaluated and treated across the US. Our goal was to gain insight into how different epilepsy centers across the country evaluate and treat children with new-onset seizures. MethodsWe conducted a survey of Epilepsy Centers in the US that are part of the Pediatric Epilepsy Research Consortium (PERC) and focused on children presenting with new-onset seizures; PERC is a group of pediatric epilepsy providers and researchers who participate in collaborative multicenter research in pediatric epilepsy with the goal of improving outcomes in children with pediatric epilepsy. The questionnaire was developed by the authors of this study. It was designed to provide a descriptive assessment of the consistency and variability in how patients with new-onset seizure are evaluated and treated at epilepsy sites across the country. The questionnaire was designed to assure all points of interest were explored. The questions were aimed at describing access to care, how care is delivered, whether centers prioritize based on clinical presentation and/or age, and availability of resources. The survey was sent to 80 epileptologists at 42 different Epilepsy Centers that are part of PERC. ResultsRespondents included 29 pediatric epileptologists representing 24 unique centers. In the cases where there were multiple respondents from each center, response of the most senior epileptologist was used. It is possible that the senior epileptologist may have not known about the center as much as a junior epileptologist, but this was used to establish consistencies among centers with multiple respondents. Results showed that 30% of centers had a dedicated new-onset seizure clinic. The median time for children to be seen was two to four weeks, and 12% reported that it takes more than five weeks until the patient is seen. There was a trend toward centers with new-onset seizure clinic having less wait times. Most centers identified lack of adequate care based on insurance coverage, resources, long wait times, and long travel times. SignificanceMost centers (70%) do not have a dedicated new-onset seizure clinic. Children presenting with new-onset seizures often do not receive timely and comprehensive care because of limitations in resources and lack of established standard of care. Standardizing care for patients presenting with new-onset seizures has not yet occurred in the US. Many centers do not have a screening process and employ staff other than physicians or nurses for screening and triaging patients. This study shows that having a neurologist or epileptologist in charge of triaging does not reduce wait times. This survey revealed that there is substantial variability in how these patients are evaluated. Although this study shows a trend for epilepsy centers with new-onset seizure clinic having less wait times, even when there is a new-onset seizure clinic, wait times can be greater than five weeks. Overall, however, a new-onset seizure clinic may be an effective way to improve access to timely and efficient care for these patients.

Breakthrough seizures, but which benzodiazepines to the rescue?

Children with epilepsy frequently experience breakthrough seizures at home, in school, or in the community that are prolonged or in clusters. Although all patients with epilepsy warrant a systematic, evidence-based, drug rescue plan for breakthroughs outside the hospital, do pediatric epileptologists prescribe in a consistent approach? In this volume of The Journal Wallace et al present results from 36 experts from the Pediatric Epilepsy Consortium queried about which medications they prescribe for breakthroughs in various situations for developmentally delayed or developmentally typical children of various ages. Among pediatric epileptologists, rectal diazepam was the most frequently chosen drug for prolonged seizures in the community across all age groups, except in developmentally typical teenagers, for whom off-label intranasal midazolam was preferred, whereas for seizure clusters, oral disintegrating clonazepam was most recommended except in young children. Although this study surveyed only a small sample, the results clearly highlight the lack of a consistent rescue plan for seizure breakthroughs in children outside a hospital. A number of factors may be to blame: lack of clinical trials and FDA-approved therapeutic options, legislative inconsistencies between jurisdictions, variable professional practice guidelines, and potential liability issues. Regardless, this wide variation in prescribing patterns for abortive rescue medications outside the hospital provides an opportunity for improvement and consensus. Epileptologists will need to continue working with parents, schools, legislators, and pharma to develop consistent approaches that are most efficacious, limit side effects, decrease hospitalizations, and preserve patient dignity. Article page 111▸ Seizure Rescue Medication Use among US Pediatric Epilepsy Providers: A Survey of the Pediatric Epilepsy Research ConsortiumThe Journal of PediatricsVol. 212PreviewTo assess how pediatric neurologists prescribe home seizure rescue medications to treat acute prolonged seizures and clusters of seizures in children. Full-Text PDF