Telehealth for patients with rare epilepsies.

Recent developments in technology and exigencies of the COVID-19 pandemic have spurred innovations for telehealth in patients with rare epilepsies. This review details the many ways telehealth may be used in the diagnosis and management of rare, pharmacoresistant epilepsy and documents our experience as measured by surveying caregivers of pediatric patients with epilepsy. Most components of the epilepsy evaluation, including history and examination, neuroimaging, and electroencephalogram (EEG) can be performed or reviewed remotely, assuming similar technique and quality of diagnostic studies. Seizure and epilepsy diagnosis is enhanced through the assistance of caregiver smart phone video recordings and 'ambulatory' EEG. Monitoring patient seizure frequency through paper seizure diaries is now increasingly being replaced by electronic diaries in both clinical and research settings. Electronic seizure diaries have numerous advantages such as data durability, increased accessibility, real-time availability, and easier analysis. Telehealth enhances access to specialized epilepsy care, which has been shown to reduce mortality and improve patient compliance and outcomes. Telehealth can also enable evaluation of patients with rare epilepsy in centers of excellence and enhance enrollment in clinical trials. Reducing mortality risk in patients with epilepsy can be accomplished through remote counseling and addressing psychiatric co-morbidities. Findings from surveying caregivers of children with epilepsy treated at Children's National Hospital showed that 54/56 (96.4%) found that not having to commute to the appointment positively contributed to their telemedicine experience. Overall, most respondents had a positive experience with their telemedicine visit. Almost all respondents (98%) were either 'very happy' or 'happy' with their telemedicine visit and their ability to communicate over telemedicine with the provider and either 'very likely' or 'likely' to want to use telemedicine for some future clinic visits. Telehealth in rare epilepsies is feasible and, in many ways, comparable with traditional evaluation and management.

Telehealth for patients with rare epilepsies Recent technological advancements and constraints caused by the COVID-19 pandemic have spurred innovations for telehealth in patients with rare epilepsies. This review details the many ways telehealth may be used in the diagnosis and management of rare, drug-resistant epilepsy and documents our experience as measured by surveying caregivers of pediatric patients with epilepsy. Most components of the epilepsy evaluation can be performed or reviewed remotely, assuming similar technique and quality of diagnostic studies. Seizure and epilepsy diagnosis is enhanced through the assistance of caregiver smart phone video recordings and 'ambulatory' electroencephalogram (EEG). Monitoring patient seizure frequency through paper seizure diaries is now increasingly being replaced by electronic diaries in both clinical and research settings. Electronic seizure diaries have numerous advantages such as data durability, increased accessibility, real-time availability, and easier analysis. Telehealth enhances access to specialized epilepsy care, which has been shown to reduce mortality and improve patient compliance and outcomes. Telehealth can also enable evaluation of patients with rare epilepsy in centers of excellence and enhance enrollment in clinical trials. Reducing mortality risk in patients with epilepsy can be accomplished through remote counseling and addressing related mental health issues. Findings from surveying caregivers of children with epilepsy treated at Children's National Hospital showed that most respondents found not having to commute to the appointment positively contributed to their telemedicine experience. Almost all respondents were either 'very happy' or 'happy' with their telemedicine visit and their ability to communicate over telemedicine with the provider and either 'very likely' or 'likely' to want to use telemedicine for some future clinic visits. Telehealth in rare epilepsies is feasible and, in many ways, comparable with traditional evaluation and management.

Be in the Digital Room Where it Happens, Part II: Social Media for Neurology Educators.

Social media has changed the way we communicate and interact. Unsurprisingly, it has also changed how we teach and learn. Younger generations of learners have transitioned from traditional educational sources to digital ones. Medical educators need to adapt to trends in medical education and develop fluency in the digital methods used by medical learners today. This is part two of a two-part series on social media and digital education in neurology. This article provides an overview of how social media can be used as a teaching tool in medical education and provides an overview in which it is grounded. We offer practical strategies on how social media can promote lifelong learning, educator development, educator support, and foster educator identity with accompanying neurology-specific examples. We also review considerations for incorporating social media into teaching and learning practices and future directions for integrating these tools in neurology education.

Physician and patient satisfaction with the switch to remote outpatient encounters in epilepsy clinics during the Covid-19 pandemic.

PURPOSE: Analyzing parents' and physicians' opinions regarding phone-based encounters in emergency shifts of a French pediatric epilepsy center compared to traditional face-to-face encounters during the first lockdown of the COVID-19 pandemic METHODS: Prospective monocentric study on remote encounters at Necker rare epilepsy reference center from March 20th, 2020 to April 23rd, 2020 due to lockdown measures. This study was conducted with a survey based on 5-point Likert scales (LS-2/2) designed for both parents and physicians. We compared first versus follow-up encounters as well as physicians' and parents' opinions. RESULTS: We had a total of 224 responses, among which 204 were completed by physicians (91%) and 173 (84,4%) by parents. Twenty five were first encounters (14,2%). Physicians pointed out the need for clinical examination (42.6%), mainly for first encounters (p=0.0004). Physicians rated the quality of communication lower (p=0.003) as their capacity to answer parents' questions (p=0.004). They were significantly less satisfied with remote encounters compared to parents (p<10-4). We identified six urgent (2.9%) and 50 semi-urgent (24%) situations requiring programming face-to-face encounter during or shortly after the lockdown. CONCLUSION: Remote encounters could be a helpful practice for pediatric patients with epilepsy in emergency situations such as pandemics. It allowed the identification and prioritization of emergency situations. Physicians were less positive than parents. We raised the possible use of remote encounters in association to face-to-face encounters for routine follow-up of pediatric patients with epilepsy.

Short-term outcomes in pediatric and adolescent patients with psychogenic nonepileptic events seen by telemedicine during the COVID-19 pandemic.

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 PNEE. 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.

Where have the children with epilepsy gone? An observational study of seizure-related accesses to emergency department at the time of COVID-19.

PURPOSE: The COVID-19 pandemic and related lockdown measures drastically changed health care and emergency services utilization. This study evaluated trends in emergency department (ED) access for seizure-related reasons in the first 8 weeks of lockdown in Italy. METHODS: All ED accesses of children (<14 years of age) at two university hospitals, in Turin and Rome, Italy, between January 6, 2020 and April 21, 2020, were examined and compared with the corresponding periods of 2019. RESULTS: During the COVID-19 lockdown period (February 23-April 21, 2020), there was a 72 % decrease in all pediatric ED accesses over the corresponding 2019 period (n = 3,395 vs n = 12,128), with a 38 % decrease in seizure-related accesses (n = 41 vs n = 66). The observed decrease of seizure-related ED accesses was not accompanied by significant changes in age, sex, type of seizure, or hospitalization rate after the ED visit. CONCLUSION: The COVID-19 lockdown was accompanied by a sudden decrease in seizure-related hospital emergency visits. School closure, social distancing, reduced risk of infection, and increased parental supervision are some of the factors that might have contributed to the finding.

Impact of COVID-19 lockdown in children with neurological disorders in Italy.

BACKGROUND: The costs and benefits of full lockdown measures are debated. Neurologically impaired children are a vulnerable population with specific needs in terms of protection against infection and access to health services. OBJECTIVES: We investigated the effects of lockdown on the health of children with neurological disorders and on their access to care during lockdown. METHODS: Data from 514 children (282 males - 232 females) were collected through physician-administered interviews to investigate: the occurrence of viral-like physical symptoms, the correlation between the risk of developing such symptoms and several demographic and clinical variables, the occurrence of any worsening of the children's neurological conditions during lockdown, and their access to care services during this period. RESULTS: 49.1% experienced at least one symptom during the study period, but no child developed severe complications. The prevalence of symptoms was significantly lower during lockdown than during the previous two months. The underlying neurological condition worsened in 11.5% of the patients. Children who regularly left the home during lockdown were greater risk of exhibiting symptoms. During lockdown, 67.7% had a specialist appointment cancelled, 52.6% contacted their paediatrician, and 30.9% contacted their child neuropsychiatrist. Among patients who usually receive rehabilitation, 49.5% continued remotely. CONCLUSION: Lockdown protected children from infections. Telemedicine and telerehabilitation constituted a valid alternative for the care and treatment of these children, but they should not become a widespread and definitive model of care. COVID-19 and other emergency response plans must take into account the specific needs of children with disabilities.

The Pediatric Neurology 2020 Research Workforce Survey: Optimism in a Time of Challenge.

BACKGROUND: The past decades have seen a transformational shift in the understanding and treatment for neurological diseases affecting infants and children. These advances have been driven in part by the pediatric neurology physician-scientist workforce and its efforts. However, pediatric neurology research faces substantial challenges from internal and external forces including work-life balance demands, COVID-19 pandemic effects, and research funding. Understanding the impact of these challenges on the perceptions, planning, and careers of pediatric neurology physician-scientists is needed to guide the research mission. METHODS: Our objective was to survey the research challenges, goals, and priorities of pediatric neurologists. In 2020 we conducted a cross-sectional, 28-question survey emailed to 1,775 members of the Child Neurology Society. RESULTS: One hundred fifty-one individuals responded to the survey. Most respondents were grant investigators (52%) and conducted clinical research (69%). Research areas included epilepsy (23%), neurodevelopmental and autism (16%), neurocritical care and stroke (11%), neurogenetics and neurometabolics (9%), neonatal neurology (8%), and others. The most common funding source was the National Institutes of Health (37%). Shared major research concerns were funding, utilization of remote technology, overcoming disparities, natural history and multicenter studies, global neurology, and diversification of the research portfolio. Commitment to continuing and increasing research efforts was evident. CONCLUSIONS: Our survey demonstrates obstacles for physician-scientist researchers in pediatric neurology, but it also shows optimism about continued opportunity. Creative approaches to address challenges will benefit the research mission, maximize the current and future pool of researchers, and help improve the lives of children with neurological disorders.

Feasibility and effectiveness of teleconsultation in children with epilepsy amidst the ongoing COVID-19 pandemic in a resource-limited country.

INTRODUCTION: The ongoing COVID-19 pandemic and the lockdown measures employed by the government have forced neurologists across the world to look upon telemedicine as the only feasible and practical option to continue providing health care towards children with epilepsy in home isolation. Children with epilepsy are challenging for teleconsultation as direct information from the patient is missing, regarding seizures and adverse effects, especially behavioral and psychological side effects. METHODS: Clinical and epilepsy-related details of telephonic consultations for children 1 month-18 years, performed between 26th March and 17th May 2020 in a tertiary care teaching hospital in Uttarakhand (a state of India known for hilly terrains with low per capita income) were recorded. Suitable changes in the dose/commercial brand of antiepileptic drug (AED) regimen were performed, along with the addition of new AED and referral to local practitioners for immediate hospitalization, when urgent health care issues were detected. Voice call, text message, picture/video message, and all other possible measures were employed to accumulate maximum clinical information in real-time. RESULTS: A total of 153 children(95 males [62 %], 9.45 ±â€¯3.24 years, 140 lower/middle socioeconomic status) were enrolled after screening 237 children with various neurological disorders, whose caregivers contacted for teleconsultation. A total of 278 telephone consultations performed for these 153 children (1-5 telephone calls per patient). Hundred-thirteen children were identified to have a total of 152 significant clinical events (breakthrough seizure/uncontrolled epilepsy (108), AED related (13), and unrelated systemic adverse effects (24), worsening of associated co-morbidities (7). In rest of the patients, the query of the caregiver included unavailability of AED/prescribed commercial brand in the locality, query related to the dose of drugs, proxy for a scheduled routine visit (no active issues), and concern regarding COVID-19 related symptoms and effect of COVID-19 and lockdown in children with epilepsy. Ninety-three (60 %) patients required hiking up of AED dose, whereas 29 (17 %) patients required the addition of a new AED/commercial brand. Five children were advised immediate admission to a nearby hospital. Overall, 147 (96 %) caregivers were satisfied with the quality of medical advice. CONCLUSION: Teleconsultation is one of the few feasible options with good effectiveness for providing medical advice to children with epilepsy during pandemic times.