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Background and Objectives: Timely access to specialist care is crucial in expeditious diagnosis and treatment. Our study aimed to assess the time patients wait from being referred by a physician to seeing a neurologist using Medicare data. Specifically, we evaluated differences in access related to sex, race/ethnicity, geography, and availability of neurologists., Methods: We conducted a cross-sectional analysis using a 2018-2019 Medicare sample of patients who had a new patient visit to a neurologist. Our primary outcome was the wait time between their last visit with the referring physician and their first visit with the neurologist (the index neurologist visit). We also looked at the time between the first visit for a neurologic condition and the index neurologist visit for that same condition. We used a linear mixed-effects model to identify the factors associated with the wait time, considering the patients' hospital referral regions (HRRs)., Results: We identified 163,313 Medicare beneficiaries who had a new patient visit with a neurologist in 2018-2019 after their physician referred them. Their average age was 73.8 (SD 10.7). The median (interquartile range) wait time to the index neurologist visit was 34 days (15-70), and 18% of patients waited >90 days. Patients with multiple sclerosis (MS) had to wait an average of 29.4 days longer, patients with epilepsy waited 10.4 days longer, and patients with Parkinson disease (PD) waited 9.3 days longer than patients with back pain. There were no significant differences in wait times across race/ethnicity and sex. Our study also showed no significant differences in wait times across regions with varying levels of neurologist availability. When patients visited a neurologist located outside of their residential or referring physician's HRR, the wait time was extended by an average of 11 days., Discussion: We found that, patients waited 34 days to see a neurologist after their physician referred them while 18% of them waited more than 90 days. Factors such as sex, race/ethnicity, and neurologist availability did not significantly affect timely access to neurologists. Patients with MS, epilepsy, and PD had longer wait times, despite needing the specialized care that neurologists can provide. This highlights the need for innovative approaches to improve timely access to neurologists.

Introduction: The ketogenic diet is a valuable nonpharmacologic therapy for the treatment of refractory epilepsy in children and adults. It can be time-intensive for ketogenic teams, typically comprised of a physician and dietitian at a minimum. Challenges and barriers to providing ketogenic diet services to patients by members of these teams has not been studied extensively., Methods: A survey was created and distributed to attendees at a ketogenic diet training conference (KetoCollegeAdvance™) held 21-23 May 2024 in United Kingdom. Questions included Likert scales and fill-in responses. Surveys were provided by 63 attendees (mostly dietitians) from 17 countries., Results: Respondents were mostly dietitians (45/63, 71 %) and from the United Kingdom. In regards to perceived interest levels in KD in general in their countries, dietitians were perceived as 80 % very or extremely interested, parents (66 %), and neurologists (45 %). The majority of teams included a dietitian (79 %) and physician (78 %). The majority, 43 (68 %) of respondents, assumed care of all aspects of epilepsy care once the KD was started. Common barriers to starting KD services included a long waiting list, lack of adult KD services, funding dietitians, and low referrals. Barriers to continuing KD services included poor patient compliance, a lack of financial resources for some families to afford foods, and a need for more pre-made ketogenic foods including bread, pizza, pasta, potato fries, and chocolates., Conclusions: These results from a conference of international ketogenic dietitians and physicians highlights common difficulties in providing the ketogenic diet successfully. Addressing these barriers may help expand the usage of this therapy for more patients with epilepsy., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: EK – Consultant to Simply Good Foods, Nutricia, Bloom Science, Cerecin, LivaNova. Data Safety Monitoring Board to NeuroPace, Royalties from Springer, Johns Hopkins University Press, UpToDate, Oxford University Press, and Elsevier. ZS – Honorarium from Nutricia and Vitaflo. Matthews Friends Medical Board Member and British Dietetic Association Professional Committee Member. JF – Director, KetoCollege., (Copyright © 2024 Elsevier Inc. All rights reserved.)

The WFN Needs Registry survey was developed and conducted over two and a half years commencing in 2020 to investigate the accessibility and affordability of neurological services and therapeutics and the most urgent needs., Method: An experienced neurologist responded in each of 118 societies to an online electronic survey comprising 13 questions. General data sought comprised the respondent's training, place of practice, duration in practice, number of neurologists in the society, health care system and types of neurological practice available. Specific data collected comprised neurological facilities, specialist services available, resources, therapeutics accessibility, challenges and three most urgent needs., Results: Responding neurologists spent a median of 26 years in practice and represented a median of 225 neurologists per society. Of 13 classes of neuromedicines deemed readily available to 70% of the population, 41 societies listed ≥1 and 14 societies ≥3 unavailable. The three most frequent unavailable neuromedicines were second level AEDs, Dopamine agonists and MS DMTs. Of 14 neurological services, 15 societies had all services accessible and affordable, 13 had none and 72 had ≥1 services either inaccessible or unaffordable. EEG, Epilepsy, Headache and EMG services were most available; Neurogenetics, Neuropsychology, Neurorehabilitation and Neurodevelopmental services were least available. Of 13 specified challenges, lack of subspecialists and specialty centers were both identified by 61% of societies followed by costs of neurological care, neuromedicines availability and stigma. Ten societies had no challenges., Conclusion: A unique insight into the inequities of neurological care globally and a potential tool to assist their remedy., (Copyright © 2024. Published by Elsevier B.V.)

Background and Objectives: Medical professionals use social media for career development, education, clinical outreach, or advocacy. Prior studies estimate that 25% to 65% of health care providers use social media professionally; however, the number of users and platforms are rapidly changing. Therefore, as part of a broader study, we set out to assess platform preferences and social media usage among neurologists., Methods: This was a multisite cross-sectional analysis consisting of a REDCap survey of clinicians, residents, and medical students. Faculty, trainees, or clinical year medical students interested in child neurology or adult neurology residency or fellowship programs within the United States were eligible to participate. Recruitment methods were broad to encompass as diverse and extensive participation as possible. Results were analyzed using descriptive statistics. Data are presented according to the STROBE guidelines., Results: Of the 226 neurology respondents, 55% (n = 124) were child neurology and 45% (n = 102) were adult neurology across all career stages, including students. Of the 70% who reported using social media in a professional capacity, the most commonly reported reasons were for networking and collaboration (n = 95, 60%), self-directed medical learning (n = 90, 57%), and brand building and reputation (n = 62, 39%). Twitter and Facebook were the most common and versatile platforms used by neurologists. Medical students had the highest documentation of social media scholarships on their curriculum vitae (37%, P  = .016) and the most interest (33%, P  = .016) in learning how to document social media scholarships if they were not already. Early faculty shared this interest more than residents, fellows, or mid-late career faculty. In all groups except for mid-late career faculty, a majority of respondents (>75%) showed interest in learning how to leverage social media for career development., Discussion: Social media is used professionally by a majority of neurologists, most commonly for networking, self-directed learning, and building individual brands. Opportunities exist to better understand platform preferences and ways to optimize their use for various professional activities as well as to provide education on effective professional use of social media including documentation for promotion.

Background: Mild cognitive impairment (MCI) is a syndrome with heterogeneous underlying causes and different rates of disease progression, whose clinical heterogeneity leads to a wide variation in diagnostic and therapeutic approaches in clinical practice. The lack of uniform practical recommendations on diagnostic workup and treatment for MCI patients hinders optimal management of these patients, worsening their prognosis. Standardized guidelines for the investigation and follow-up of MCI are therefore urgently required., Aim: Aim of our study was to assess the diagnostic and therapeutic approach to MCI patients in the setting of Italian Memory Clinics., Methods: A survey was delivered to a sample of Italian neurologists through two different phases: a first exploratory phase recording general information about the usual clinical management of patients with MCI, and a subsequent operative phase assessing the practical diagnostic and therapeutic decisions taken in a real life setting to manage subjects with MCI., Results: A total of 121 neurologists participated to the first phase of the survey and 203 patients were enrolled in the second phase. Information gathered in the first phase of the survey highlighted a non-uniform use of diagnostic criteria and procedures for MCI, as well as a very heterogeneous therapeutic strategy among Italian neurologists. In the second phase, recorded data on diagnostic and therapeutic approach confirmed the large variability observed in the first phase of the survey., Conclusions: The results of our study reflect a suboptimal management of MCI patients in Italy and highlight the need of standardized diagnostic and therapeutic approaches for this condition., (© 2024. The Author(s).)

Background: Functional Neurological Disorder (FND) is commonly encountered in clinical practice, causing functional impairment and poor quality of life. As there is limited data from Saudi Arabia, our study aims to explore the experience and opinions of Saudi neurologists and neurology trainees regarding FND., Methods: In our cross-sectional observational study, we included 100 neurology consultants and trainees. Data was collected using an online questionnaire from March to August 2023., Results: A total of one hundred neurologists participated in the survey. Although 41% of physicians encountered FND patients on a weekly basis or more frequently, only 41.7% of trainees reported receiving dedicated lectures on FND. Furthermore, only 46% of respondents felt comfortable providing a clear explanation of the FND diagnosis to their patients. While the majority (64%) used the term "Functional Neurological Disorder" in medical documentation, only 43% used this term when communicating the diagnosis to patients, with the terminology varying widely. Clinicians emphasized that inconsistent and variable neurological examinations were key indicators raising diagnostic suspicion, which aligns with the recommended reliance on detailed clinical history and neurological examination. Lastly, 61% of physicians stated that their approach to patients with FND lacked a structured management plan., Conclusion: Our study findings emphasize that FND is commonly encountered in clinical practice and reveal a significant lack of targeted education on FND for neurology trainees. Enhancing educational programs for both trainees and practicing neurologists on this prevalent neurological condition is essential for improving patient care and outcomes., (© 2024. The Author(s).)

Objective. To evaluate the inter- and intra-rater reliability for the identification of bad channels among neurologists, EEG Technologists, and naïve research personnel, and to compare their performance with the automated bad channel detection (ABCD) algorithm for detecting bad channels. Approach. Six Neurologists, ten EEG Technologists, and six naïve research personnel (22 raters in total) were asked to rate 1440 real intracranial EEG channels as good or bad. Intra- and interrater kappa statistics were calculated for each group. We then compared each group to the ABCD algorithm which uses spectral and temporal domain features to classify channels as good or bad. Main results. Analysis of channel ratings from our participants revealed variable intra-rater reliability within each group, with no significant differences across groups. Inter-rater reliability was moderate among neurologists and EEG Technologists but minimal among naïve participants. Neurologists demonstrated a slightly higher consistency in ratings than EEG Technologists. Both groups occasionally misclassified flat channels as good, and participants generally focused on low-frequency content for their assessments. The ABCD algorithm, in contrast, relied more on high-frequency content. A logistic regression model showed a linear relationship between the algorithm's ratings and user responses for predominantly good channels, but less so for channels rated as bad. Sensitivity and specificity analyses further highlighted differences in rating patterns among the groups, with neurologists showing higher sensitivity and naïve personnel higher specificity. Significance. Our study reveals the bias in human assessments of intracranial electroencephalography (iEEG) data quality and the tendency of even experienced professionals to overlook certain bad channels, highlighting the need for standardized, unbiased methods. The ABCD algorithm, outperforming human raters, suggests the potential of automated solutions for more reliable iEEG interpretation and seizure characterization, offering a reliable approach free from human biases., (Creative Commons Attribution license.)

Background: Although care of Parkinsonism (PKM) is assumed to be optimally provided by movement disorder neurologists within an interdisciplinary clinic model, there is a paucity of published data to support this., Objectives: To investigate the impact of movement disorder neurologist care of individuals with Parkinsonism (PKM)., Methods: A retrospective exposure design was adopted using administrative data. Incident PKM individuals were identified in billing claims. A nine-year exposure period to movement disorder neurologist, general neurologist and non-neurologist care was calculated based on the billing codes. Regression models were used to test the association of provider exposure on time to death and long-term care (LTC) admission. Linear models were used to test varying provider exposure and hospital admissions, hospital days and emergency department visits., Results: 1914 incident individuals were identified. There was no difference in PKM mortality, emergency visits, hospital admissions, or hospital days between providers, however exposure to general neurology and non-neurology care was associated with a significantly higher risk of admission to LTC compared to movement disorder neurologist care (HR 1.43; 95% CI 1.09-1.87 for general neurology (p-value = 0.0089); HR 1.61; 95% CI 1.25-2.05 for non-neurology (p-value = 0.0002), respectively., Conclusion: Movement disorder neurologist care is associated with a lower risk of admission to LTC over general neurologist care in individuals with PKM., Competing Interests: Declaration of competing interest The author group has no competing interest in regard to this manuscript. No AI was used during the creation of this submission. Financial disclosures are individually listed in each author's declaration. There is no conflict of interest relating to those mentioned that pertain to the content within this submission., (Crown Copyright © 2024. Published by Elsevier Ltd. All rights reserved.)

Background: Multiple system atrophy (MSA) is a progressive, incurable, life-threatening neurodegenerative disease uniquely characterized by the risk of sudden death, which makes diagnosis delivery challenging for neurologists. Empirical studies on breaking a diagnosis of MSA are scarce, with no guidelines currently established. This study aimed to investigate neurologists' current practices and experiences in delivering the diagnosis of MSA., Methods: We conducted a multicenter online survey and employed a mixed-methods (quantitative and qualitative) study design in which responses to open-ended questions were analyzed qualitatively using critical incident technique., Results: Among the 194 neurologists surveyed, 166 opened the survey (response rate = 85.6%), of whom 144 respondents across various Japanese regions completed the survey. Accordingly, 92.3% and 82.8% of the participating neurologists perceived delivering the diagnosis of MSA and explaining the risk of sudden death as difficult, respectively. Factors independently associated with difficulties in diagnosis delivery included explaining the importance of the family decision making process in life-prolonging treatment, perceived difficulties in delivering information regarding the risk of sudden death, and perceived difficulties in differential diagnosis of MSA., Conclusions: Our findings showed that the majority of neurologists perceived delivering the diagnosis of MSA and explaining the risk of sudden death as difficult, which could have been associated with the difficulty of breaking the diagnosis of MSA. Difficulty in conveying bad news in MSA are caused by various factors, such as empathic burden on neurologists caused by the progressive and incurable nature of MSA, the need to explain complex and important details, including the importance of the family decision-making process in life-prolonging treatment, difficulty of MSA diagnosis, and communication barriers posed by mental status and cognitive impairment in patients or their family members. Neurologists consider various factors in explaining the risk of sudden death (e.g., patient's personality, mental state, and degree of acceptance and understanding) and adjust their manner of communication, such as limiting their communication on such matters or avoiding the use of the term "sudden death" in the early stages of the disease. Although neurologists endeavor to meet the basic standards of good practice, there is room for the multiple aspects for improvement., (© 2024. The Author(s).)

Background: Access to, standardization and reimbursement of multidisciplinary care for people with MS (PwMS) is lacking in many countries. Therefore, this study aims to describe the current multidisciplinary care for people with MS (PwMS) in Belgium and identify benefits, needs and future perspectives METHODS: A survey for PwMS questioned various aspects of MS and viewpoints on care. For MS nurses (MSN) and neurologists, employment, education, job-content, care organization and perspectives were inquired. Descriptive and univariate statistics were performed RESULTS: The PwMS survey comprised 916 respondents with a mean age of 46±12.7 years and 75,4 % of the respondents being female. The majority of the participants had relapsing remitting MS (60.8 %) and the mean patient determined disease steps (PDDS) was 2.0 (IQR=3). 65.3 % and 60.4 % of the PwMS reported having access to a multidisciplinary team (MDT) or MSN. Access to an MSN was associated with more frequent disease modifying treatment (p=.015), spasticity (p=.042) and gait treatment (p=.035), but also more physiotherapy (p=.004), driver's license adjustment (p<.001) and a higher employment rate (p=.004). MDT access was associated with more frequent symptomatic bladder treatment (p=.047), higher physiotherapy rate (p<.001), higher work- (p=.002), insurance- (p<.001) and home support measures (p=.019). PwMS without an available MDT more often indicated that MS care needs improvement (p<.001). MSN's (n = 22) were mainly funded through various budgets, including hospital and neurology practice budgets. Finally, 69 % and 75 % neurologists (n = 62) working without an MSN or MDT stated a need of such support and 61 % agreed that MDT's should be organized at hospital-network level CONCLUSION: MDT and MSN availability may enhance medical and socio-economic support for PwMS. Guidelines, alignment and reimbursement are needed., Competing Interests: Declaration of competing interest The authors declare that they have no conflict of interest to report., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Background: Despite the global availability of multiple sclerosis (MS) treatments, accessing and financing them in Southeast Asia (SEA) remains a challenge. This descriptive survey-based study aimed to describe the current state of MS treatment access and local access dynamics within this region., Methods: The survey questionnaire, comprising of 15 closed-ended and five open-ended questions, was developed by three neurologists with expertise in MS and routine MS patient management, or had training in neuroimmunology. Questionnaire development was guided by the recent Atlas of MS and in alignment with the Access to Treatment framework, focusing on MS diagnosis and treatment issues in SEA. Fifteen neurologists experienced in managing MS across the region were identified as key informants for this study., Results: All fifteen neurologists participated in the survey via email and videoconferencing between January 2020 and February 2023, which included the following countries: Brunei, Cambodia, Indonesia, Malaysia, Myanmar, Lao PDR, Philippines, Singapore, Thailand, Timor-Leste, and Vietnam. All had at least five years of experience in managing MS patients and six had previously completed a neuroimmunology fellowship programme. SEA countries showed disparities in healthcare financing, availability of neurologists, MS treatments, and investigative tools. Access to MS disease-modifying treatments (DMTs) is hindered by high cost, lack of MS specialists, and weak advocacy efforts. On-label DMTs are not listed as essential medicines regionally except for interferon beta1a and teriflunomide in Malaysia. On-label monoclonals are available only in Malaysia, Singapore, and Thailand. Generic on-label DMTs are unavailable due to lack of distributorship and expertise in using them. Off-label DMTs (azathioprine, methotrexate, and rituximab) predominate in most SEA countries. Other challenges include limited access to investigations, education, and knowledge about DMTs among general neurologists, and absence of registries and MS societies. Patient champions, communities, and MS organisations have limited influence on local governments and pharmaceutical companies. Despite its increasing prevalence, there is a lack of concerted priority setting due to MS being perceived as a rare, non-communicable disease., Conclusion: This study highlights the distinct dynamics, challenges, and research gaps within this region, and provides suggestions to improve MS diagnosis, education, and medicine access., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Tianrong Yeo reports a relationship with Edanz Group Ltd that includes: consulting or advisory. Tianrong Yeo reports a relationship with Merck & Co Inc that includes: consulting or advisory and travel reimbursement. Tianrong Yeo reports a relationship with EUROIMMUN Medizinische Labordiagnostika AG that includes: consulting or advisory. Tianrong Yeo reports a relationship with Novartis that includes: consulting or advisory. Tianrong Yeo reports a relationship with Terumo BCT that includes: consulting or advisory. Tianrong Yeo reports a relationship with ASEAN Neurological Association that includes: consulting or advisory. Tianrong Yeo reports a relationship with National Medical Research Center that includes: funding grants. Tianrong Yeo reports a relationship with Roche that includes: funding grants. Joanna Laurson-Doube reports a relationship with Bristol Myers Squibb Co that includes: funding grants. Joanna Laurson-Doube reports a relationship with Sanofi that includes: funding grants. Joanna Laurson-Doube reports a relationship with Merck & Co Inc that includes: funding grants. Joanna Laurson-Doube reports a relationship with Viatris that includes: funding grants. Joanna Laurson-Doube reports a relationship with Novartis that includes: funding grants. Joanna Laurson-Doube reports a relationship with Biogen that includes: funding grants. Joanna Laurson-Doube reports a relationship with Roche that includes: funding grants., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Introduction: Distance to physicians may explain some of the disparities in Alzheimer's disease and related dementia (AD/ADRD) outcomes., Methods: We generated round trip distance between residences of decedents with AD/ADRD and the nearest neurologist and primary care physician in Washington State., Results: The overall mean distance to the nearest neurologist and primary care physician was 17 and 4 miles, respectively. Non-Hispanic American Indian and/or Alaska Native and Hispanic decedents would have had to travel 1.12 and 1.07 times farther, respectively, to reach the nearest neurologist compared to non-Hispanic White people. Decedents in micropolitan, small town, and rural areas would have had to travel 2.12 to 4.01 times farther to reach the nearest neurologist and 1.14 to 3.32 times farther to reach the nearest primary care physician than those in metropolitan areas., Discussion: These results underscore the critical need to identify strategies to improve access to specialists and primary care physicians to improve AD/ADRD outcomes., Highlights: Distance to neurologists and primary care physicians among decedents with AD/ADRD American Indian and/or Alaska Native decedents lived further away from neurologists Hispanic decedents lived further away from neurologists Non-metropolitan decedents lived further away from neurologists and primary care Decrease distance to physicians to improve dementia outcomes., (© 2024 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

Introduction: This study was designed to assess current recommendations from child neurologists and epileptologists on masking for school-age children with epilepsy., Methods: A 7-item survey was created and sent out to members of the Child Neurology Society and Pediatric Epilepsy Research Consortium in August of 2021 to assess current practice and provider recommendations on masking., Results: One hundred four individuals participated with representation from all regions of the United States. Masking was recommended by 95.1%, with 63.4% (n = 66) noting exception of those with severe intellectual disability, autism, and behavioral problems. Of those who write exemption letters, 54% write these <5% of the time. Only 3% reported potential adverse events associated with masking., Conclusion: Nearly all respondents recommended masking for school-age children with epilepsy. Potential risks of masking and adverse events were low. Improved guidance on masking is needed to ensure academic success of our patients with epilepsy.

Objective: To explore perspectives of pediatric neurologists regarding sexual and reproductive health care for adolescent women with epilepsy (WWE) and intellectual disability., Methods: We interviewed pediatric neurologists regarding sexual and reproductive health for WWE with intellectual disability. We audio-recorded and transcribed interviews and conducted qualitative analysis., Results: 16 pediatric neurologists participated. Themes included the following: (1) Pediatric neurologists have differing perspectives about how intellectual disability affects WWE's sexual and reproductive health needs, (2) pediatric neurologists provide sexual and reproductive health counseling variable in content and frequency to this population, (3) pediatric neurologists tend to recommend longer-term methods of contraception for this population, and (4) pediatric neurologists are asked to be involved in decision-making around sterilization, yet express ethico-legal reservations., Conclusion: Our findings suggest pediatric neurologists provide variable, often suboptimal, sexual and reproductive health care for WWE and intellectual disability. Themes reveal ethical concerns among neurologists about sexual and reproductive health practices including sterilization. More tailored clinical guidelines and provider training on sexual and reproductive health for this population may be beneficial.

Background: The initial COVID-19 pandemic shutdown led to the canceling of elective surgeries throughout most of the USA and Canada., Objective: This survey was carried out on behalf of the Parkinson Study Group (PSG) to understand the impact of the shutdown on deep brain stimulation (DBS) practices in North America., Methods: A survey was distributed through RedCap® to the members of the PSG Functional Neurosurgical Working Group. Only one member from each site was asked to respond to the survey. Responses were collected from May 15 to June 6, 2020., Results: Twenty-three sites participated; 19 (83%) sites were from the USA and 4 (17%) from Canada. Twenty-one sites were academic medical centers. COVID-19 associated DBS restrictions were in place from 4 to 16 weeks. One-third of sites halted preoperative evaluations, while two-thirds of the sites offered limited preoperative evaluations. Institutional policy was the main contributor for the reported practice changes, with 87% of the sites additionally reporting patient-driven surgical delays secondary to pandemic concerns. Pre-post DBS associated management changes affected preoperative assessments 96%; electrode placement 87%; new implantable pulse generator (IPG) placement 83%; IPG replacement 65%; immediate postoperative DBS programming 74%; and routine DBS programming 91%., Conclusion: The COVID-19 pandemic related shutdown resulted in DBS practice changes in almost all North American sites who responded to this large survey. Information learned could inform development of future contingency plans to reduce patient delays in care under similar circumstances., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Immigrant neurologists on a visa make up one-fourth of our neurology resident workforce. In this article, we describe the challenges faced by them in pursuit of a career as physician-scientists. We highlight the key role that immigration status plays in various aspects of research advancement early along the neurology pipeline, pertaining to clinical career decisions and the associated delay in achieving these milestones. We conclude with a call to action to address these key roadblocks, which would have the additional potential benefit of improving inclusion and diversity in clinical and translational science. ANN NEUROL 2021;90:542-545., (© 2021 American Neurological Association.)

CDKL5 deficiency disorder (CDD) results in early-onset seizures and severe developmental impairments. A CDD clinical severity assessment (CCSA) was previously developed with clinician and parent-report items to capture information on a range of domains. Consistent with US Food and Drug Administration (FDA) guidelines, content validation is the first step in evaluating the psychometric properties of an outcome measure. The aim of this study was to validate the content of the clinician-reported items in the CCSA (CCSA-Clinician). Eight neurologists leading the USA CDD Center of Excellence clinics were interviewed using the "think aloud" technique to critique 26 clinician-reported items. Common themes were aggregated, and a literature search of related assessments informed item modifications. The clinicians then participated in 2 consensus meetings to review themes and finalize the items. A consensus was achieved for the content of the CCSA-Clinician. Eight of the original items were omitted, 11 items were added, and the remaining 18 items were revised. The final 29 items were classified into 2 domains: functioning and neurologic impairments. This study enabled refinement of the CCSA-Clinician and provided evidence for its content validity. This preliminary validation is essential before field testing and further validation, in order to advance the instrument toward clinical trial readiness.

Objective: To provide the initial description of the quality of outpatient US neurologic care as collected and reported in the Axon Registry., Methods: We describe characteristics of registry participants and the performance of neurology providers on 20 of the 2019 Axon Registry quality measures. From the distribution of providers' scores on a quality measure, we calculate the median performance for each quality measure. We test for associations between quality measure performance, provider characteristics, and intrinsic measure parameters., Results: There were 948 neurology providers who contributed a total of 6,480 provider-metric observations. Overall, the average quality measure performance score at the provider level was 66 (median 77). At the measure level (n = 20), the average quality measure performance score was 53 (median 55) with a range of 2 to 100 (interquartile range 20-91). Measures with a lower-complexity category (e.g., discrete orders, singular concepts) or developed through the specialty's qualified clinical data registry pathway had higher performance distributions. There was no difference in performance between Merit-Based Incentive Payment System (MIPS) and non-MIPS providers. There was no association between quality measure performance and practice size, measure clinical topic/neurologic condition, or measure year of entry., Conclusions: This cross-sectional assessment of quality measure performance in 2019 Axon Registry data demonstrates modest performance scores and considerable variability across measures and providers. More complex measures were associated with lower performance. These findings serve as a baseline assessment of quality of ambulatory neurologic care in the United States and provide insights into future measure design., (© 2021 American Academy of Neurology.)

Expanding the US Food and Drug Administration-approved indications for immune checkpoint inhibitors in patients with cancer has resulted in therapeutic success and immune-related adverse events (irAEs). Neurologic irAEs (irAE-Ns) have an incidence of 1%-12% and a high fatality rate relative to other irAEs. Lack of standardized disease definitions and accurate phenotyping leads to syndrome misclassification and impedes development of evidence-based treatments and translational research. The objective of this study was to develop consensus guidance for an approach to irAE-Ns including disease definitions and severity grading. A working group of four neurologists drafted irAE-N consensus guidance and definitions, which were reviewed by the multidisciplinary Neuro irAE Disease Definition Panel including oncologists and irAE experts. A modified Delphi consensus process was used, with two rounds of anonymous ratings by panelists and two meetings to discuss areas of controversy. Panelists rated content for usability, appropriateness and accuracy on 9-point scales in electronic surveys and provided free text comments. Aggregated survey responses were incorporated into revised definitions. Consensus was based on numeric ratings using the RAND/University of California Los Angeles (UCLA) Appropriateness Method with prespecified definitions. 27 panelists from 15 academic medical centers voted on a total of 53 rating scales (6 general guidance, 24 central and 18 peripheral nervous system disease definition components, 3 severity criteria and 2 clinical trial adjudication statements); of these, 77% (41/53) received first round consensus. After revisions, all items received second round consensus. Consensus definitions were achieved for seven core disorders: irMeningitis, irEncephalitis, irDemyelinating disease, irVasculitis, irNeuropathy, irNeuromuscular junction disorders and irMyopathy. For each disorder, six descriptors of diagnostic components are used: disease subtype, diagnostic certainty, severity, autoantibody association, exacerbation of pre-existing disease or de novo presentation, and presence or absence of concurrent irAE(s). These disease definitions standardize irAE-N classification. Diagnostic certainty is not always directly linked to certainty to treat as an irAE-N (ie, one might treat events in the probable or possible category). Given consensus on accuracy and usability from a representative panel group, we anticipate that the definitions will be used broadly across clinical and research settings., Competing Interests: Competing interests: ACG has served on an advisory board and/or consulted with Alexion, Ra Pharma/UCB and Momenta pharmaceuticals/Janssen. She has received royalties from Oakstone Publishing and research support from the Myasthenia Gravis Foundation of America, the MG Rare Disease Network and Project Data Sphere® for an irAE-N registry. She has received clinical trial support to the institution from Ra Pharma and Momenta. LBB receives salary support from Biogen, royalties from Oakstone Publishing, and research support from Project Data Sphere for an irAE-N registry. BKC reports research support from Project Data Sphere for an irAE-N registry. JH receives research support from Project Data Sphere for an irAE-N registry and from GE Healthcare. THS is an employee at the not-for-profit corporation Project DS, with a trade name of Project Data Sphere. AAA served on medical advisory boards for Alexion, Sarepta, CSL Behring, Strongbridge Pharma, Argenx, Ra Pharmaceuticals, and as a neurology consultant for Johnson & Johnson COVID-19 vaccine trials. ABW served on a medical advisory board or as a consultant with Iovance, Novartis, Shanghai Jo’Ann Medical Technology. PKB has consulted for Angiochem, Genentech-Roche, Lilly, Tesaro, Voyager Therapeutics, ElevateBio, Pfizer (Array), Pfizer, SK Life Sciences and Dantari, received grant/research support (to Massachusetts General Hospital) from Merck, BMS and Lilly and honoraria from Merck, Pfizer, Genentech-Roche and Lilly. TAC has received royalties from Wolters Kluwer. SLC serves as the Editor of the Neurology®Podcast and Neurology Minute™. She has received research and/or clinical fellowship support from the Western Institute for Veterans Research, the Siegel Rare Neuroimmune Association, the Immune Deficiency Foundation, Alexion, the Barbara Gural Steinmetz Foundation, and the Sumaira Foundation for NMO. She has served on an advisory board and/or consulted with Alexion, Genentech, VielaBio, Guidepoint, Clarion Healthcare Consulting, ExpertConnect (majority fees paid to University of Utah). JC has received consulting fees from Sanofi-Genzyme and BMS. JD is a consultant for Blue Earth Diagnostics, Magnolia, Gamaka Bio, and Unum Therapeutics. JD has received research support from Beacon Biosignals, Boehringer Ingelheim, Brystol-Myers Squibb, Eli Lilly, Medimmune, Acerta Pharma, Orbus Therapeutics, and Novartis Pharmaceuticals. JD has received royalties from Wolters Kluwer for serving as an author for UpToDate. MD has research funding from Novartis and Eli Lilly, has served as a consultant for Roche-Genentech, Tillotts Pharma, ORIC Pharmaceuticals, Partner Therapeutics, and Moderna, and is a member of the Scientific Advisory Board for Neoleukin Therapeutics. CTD has served on advisory boards for Argenx and Dysimmune Diseases Foundation. He has received royalties from Oakstone Publishing. He has received grant support from NINDS/NeuroNext. DD has served on an advisory board and/or consulted for UCB, Astellas and Immunovant pharmaceuticals. All compensation for the consulting activities is paid to Mayo Clinic. He has patents pending for KLHL11 and LUZP4 as markers of neurological autoimmunity and germ cell tumors. JG has received research to UCSF support from Genentech/Roche for a clinical trial, performed consulting for Biogen, and received personal compensation for medical-legal consulting. JTG has served as a consultant in past 12 months for Immunovant, Alexion, Momenta, Ra Pharma, Grifols, Jacobus, Cabaletta, Regeneron, Argenx, Signant, UCB, Toleranzia and Piedmont Pharmaceuticals. He receives industry grant support from UCB pharma for a fellowship training grant. Full disclosure statement available at: https://dcri.org/about-us/conflict-of-interest/. DBJ has served on advisory boards for Array Biopharma, BMS, Catalyst Biopharma, Iovance, Jansen, Merck, Novartis, and Oncosec, and has received research funding from BMS and Incyte. VCJ is a site investigator in myasthenia gravis research trials sponsored by PCORI and by Alexion Pharmaceuticals. RK receives research funding from Alexion Pharmaceuticals. NK reports no relevant disclosures. NRL is a consultant and has received honoraria from Bayer, Seattle Genetics, Sanofi, Fortress Biotech, Silverback Therapeutics and SYNOX Therapeutics. JL reports no disclosures. AM reports no disclosures. MM-L reports no relevant disclosures. MJM has served on an advisory board and/or consulted with AstraZeneca Pharmaceuticals, Nektar Therapeutics, Catalyst Pharmaceuticals and Immunai. JN has received research funding from Merck and AstraZeneca; served as a consultant/advisory board member with Merck, AstraZeneca, BMS, Pfizer, Takeda, Roche/Genentech, Daiichi/Sankyo and has received honoraria from Merck, AstraZeneca, BMS, Pfizer, Takeda, Roche/Genentech. TGN reports acting as a consultant for Parexel, Bristol Myers-Squibb, H3 Biomedicine, AbbVie, and Intrinsic Imaging unrelated to the current research. TGN reports grant funding from AstraZeneca unrelated to current research. DR has been an advisor or consultant with AbbVie; Advantagene; Agenus; Agios; Amgen; Bayer; Boston Biomedical; Boehringer Ingelheim; Bristol-Myers Squibb; Celldex; Deciphera; DelMar; EMD Serono; Genenta; Genentech/Roche; Imvax; Inovio; Kintara; Kiyatec; Medicenna Biopharma; Merck; Merck KGaA; Monteris; Neuvogen; Novartis; Novocure; Oncorus; Oxigene; Regeneron; Stemline; Sumitono Dainippon Pharma; Taiho Oncology. Research support to his institution has been provided by Acerta Phamaceuticals; Agenus; Celldex; EMD Serono; Incyte; Inovio; Omniox; Tragara. KMR has served on an advisory board and/or consulted with Merck, BMS, and Eisai. BDS has served on an advisory board and/or consulted with Janssen, Kite/Gilead, and Celgene/BMS. RS has served on an advisory board and/or consulted with AstraZeneca, Bristol-Myers Squib, Eisai, Iovance, Merck, Novartis, Oncosec, Pfizer, and Replimune. He has received research funding from Merck. NW has served on an advisory board with Seattle Genetics, received royalties from Wolters Kluwer and research support from Merck. KW reports no disclosures. LZ has been a consultant for Merck. WCL is an employee of the not-for-profit corporation Project DS, with a trade name of Project Data Sphere. KLR has received personal compensation from Teladoc research support from Project Data Sphere for a irAE-N registry., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Changes in epilepsy care during the COVID-19 pandemic required to reassess the patient-specialist interaction in the context of telehealth and future vaccination campaigns., Aims of the Study: The aims were to outline changes in neurologists' experience when providing care for patients with epilepsy (PWE) and to investigate how neurologists perceive telehealth and vaccination., Methods: We conducted an anonymous cross-sectional online survey among members of the Lithuanian Association of Neurology., Results: We received 104 completed forms by adult (74, 71.15%) and pediatric neurologists (30, 28.85%). A decrease in epilepsy consultations was noted by 76 (73.1%) specialists, and up to 26 (25.0%) could not provide diagnostic tests at a usual rate. Most respondents (99, 95.2%) would recommend the COVID-19 vaccine for patients at risk. Telehealth was valued as a useful tool in epilepsy care, especially if combined with timely diagnostic and treatment options (Kruskal-Wallis chi-square = 10.392, p = .034 and F[4,99] = 3.125, p = .018, respectively). According to 85 (81.7%) respondents, video calls could substitute in-person visits in at least half of all consultations., Conclusions: Despite disrupted epilepsy care, neurologists may benefit from telehealth when providing services for PWE and become vaccination advocates to mitigate the spread of preventable infections., (© 2021 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Objective: To characterize patients who utilize services for migraine in a large integrated health care network, and describe patterns of care and utilization., Background: Within health care systems, migraine is a common reason for seeking primary and neurology care, but relatively little is documented about who seeks care and the factors that explain variation in utilization., Methods: We conducted a retrospective cohort study using electronic health record (EHR) data from Sutter Health primary care (PC) patients who had at least one office visit to a PC clinic between 2013 and 2017. Migraine status was ascertained from diagnosis codes and medication orders. Control status was assigned to those with no evidence of care for any type of headache. We divided the primary care migraine cohort into two groups: those who received all their care for migraine from PC (denoted PC-M) and those who had ≥1 encounter with a neurologist for migraine (denoted N-M). Migraine cases were also designated as having preexisting migraine if they had an encounter with a migraine diagnosis within (±) 6 months of their first study period PC visit and, otherwise, designated as first migraine consult. Two levels of contrasts included: patients with migraine and controls; and within the group of patients with migraine, PC-M and N-M groups. Comorbid conditions were determined from EHR encounter diagnosis codes., Results: We identified 94,149 patients with migraine (including 21,525 N-M and 72,624 PC-M) and 1,248,763 controls. Comorbidities: Proportions of psychiatric [29.8% (n = 28,054) vs. 11.8% (n = 147,043)], autoimmune [(4.4% (n = 4162) vs. 2.6% (n = 31,981)], pain [13.2% (n = 12,439) vs. 5.8% (n = 72,049)], respiratory [24.6% (n = 23,186) vs. 12.3% (n = 153,692)], neurologic [2.9% (n = 2688) vs. 0.9% (n = 11,321)], and cerebrovascular [1.0% (n = 945) vs. 0.6% (n = 7500)] conditions were higher in the migraine group compared to controls, all p < 0.001. Among patients with migraine, the N-M group was similar to the PC-M group in sex, age, ethnicity, and marital status, but were more likely to have preexisting migraine (49.9% (n = 10,734) vs. 36.2% (n = 26,317), p < 0.001). Proportions of comorbid conditions were higher among the N-M group than the PC-M group {psychiatric [38.5% (n = 8291) vs. 27.2% (n = 19,763)], autoimmune [6.3% (n = 1365) vs. 3.9% (n = 2797)], pain [19.6% (n = 4218) vs. 11.3% (n = 8211)], respiratory [30.3% (n = 6516) vs. 23.0% (n = 16,670)], neurologic [6.0% (n = 1288) vs. 1.9% (n = 1400)], cardiovascular [9.7% (n = 2091) vs. 7.0% (n = 5076)], and cerebrovascular [2.3% (n = 500) vs. 0.6% (n = 445)], all p < 0.001}. Medications: During the study period, 82.6% (n = 77,762) of patients with migraine received ≥1 prescription order for an acute migraine medication [89.4% (n = 19,250) of N-M vs. 80.6% (n = 58,512) of PC]. Opioids were prescribed to 52.9% (n = 49,837) of patients with migraine [63.5% (n = 13,669) for N-M and 49.8% (n = 36,168) for PC-M patients). During the study period, 61.4% (n = 57,810) of patients received ≥1 prescription for a migraine preventive medication [81.4% (n = 17,521) of N-M and 55.5% (n = 40,289) of PC-M patients]. The most commonly prescribed classes of preventive medications were antidepressants., Conclusions: Among patients with migraine in a large health system, those who were also cared for in neurology were more likely to receive both acute and preventive medication migraine orders than those patients who did not see a neurologist, with triptans and antidepressants the most commonly prescribed classes of acute and preventive pharmacotherapies, respectively. Opioids were prescribed to approximately half of the total sample and more common in the N-M group. Adjusting for demographics, patients with migraine had higher rates of nearly every comorbidity we assessed and were more likely to utilize services compared to those without migraine. Overall, patients with migraine also cared for in neurology practices used more of all health care resource types under consideration and had more medical issues, which may be due in some part to a more severe, frequent and disabling disease state compared to those who sought care exclusively from PC practices., (© 2020 Sutter Health Research. Headache: The Journal of Head and Face Pain published by Wiley Periodicals LLC, on behalf of American Headache Society.)

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., (Crown Copyright © 2020. Published by Elsevier Inc. All rights reserved.)

Objective: To assess the impact of ongoing COVID-19 pandemic on epilepsy care in India., Methods: We conducted a three-part survey comprising neurologists, people with epilepsy (PWE), and 11 specialized epilepsy centers across India. We sent two separate online survey questionnaires to Indian neurologists and PWE to assess the epilepsy practice, seizures control, and access to care during the COVID-19 pandemic. We collected and compared the data concerning the number of PWE cared for and epilepsy procedures performed during the 6 months periods preceding and following COVID-19 lockdown from epilepsy centers., Results: The survey was completed by 453 neurologists and 325 PWE. One third of the neurologist reported >50 % decline in outdoor visits by PWE and EEG recordings. The cumulative data from 11 centers showed 65-70 % decline in the number of outdoor patients, video-EEG monitoring, and epilepsy surgery. Working in a hospital admitting COVID-19 patients and use of teleconsultation correlated with this decline. Half of PWE had postponed their planned outpatient visits and EEG. Less than 10 % of PWE missed their antiseizure medicines (ASM) or had seizures due to the nonavailability of ASM. Seizure control remained unchanged or improved in 92 % PWE. Half of the neurologists started using teleconsultation during the pandemic. Only 4% of PWE were afflicted with COVID-19 infection., Conclusions: Despite significant decline in the number of PWE visiting hospitals, their seizure control and access to ASMs were not affected during the COVID-19 pandemic in India. Risk of COVID-19 infection in PWE is similar to general population., (Copyright © 2021 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)

Objectives: The Psychology Task Force of the Medical Therapies Commission of the International League Against Epilepsy (ILAE) has been charged with taking steps to improve global mental health care for people with epilepsy. This study aimed to inform the direction and priorities of the Task Force by examining epilepsy healthcare providers' current practical experiences, barriers, and unmet needs around addressing depression and anxiety in their patients., Methods: A voluntary 27-item online survey was distributed via ILAE chapters and networks. It assessed practices in the areas of screening, referral, management, and psychological care for depression and anxiety. A total of 445 participants, from 67 countries (68% high income), commenced the survey, with 87% completing all components. Most respondents (80%) were either neurologists or epileptologists., Results: Less than half of respondents felt adequately resourced to manage depression and anxiety. There was a lack of consensus about which health professionals were responsible for screening and management of these comorbidities. About a third only assessed for depression and anxiety following spontaneous report and lack of time was a common barrier (>50%). Routine referrals to psychiatrists (>55%) and psychologists (>41%) were common, but approximately one third relied on watchful waiting. A lack of both trained mental health specialists (>55%) and standardized procedures (>38%) was common barriers to referral practices. The majority (>75%) of respondents' patients identified with depression or anxiety had previously accessed psychotropic medications or psychological treatments. However, multiple barriers to psychological treatments were endorsed, including accessibility difficulties (52%)., Significance: The findings suggest that while the importance of managing depression and anxiety in patients with epilepsy is being recognized, there are ongoing barriers to effective mental health care. Key future directions include the need for updated protocols in this area and the integration of mental health professionals within epilepsy settings., Competing Interests: Author Gandy, Modi, Wagner, LaFrance, Reuber, Tang, Valente, Donald, and Michaelis received a travel stipend from the ILAE to attend the 33rd International Epilepsy Congress in Bangkok Thailand (June 2019), during which the Task Force had one‐day meeting where the promotion and results of the survey were discussed. Author Gandy is supported by a Macquarie University Research Fellowship. She develops and evaluates psychological treatment programs for adults with neurological disorders, including epilepsy. These clinical trials follow CONSORT reporting standards and are ethics committee‐approved and peer‐reviewed to address any potential bias. Author Modi receives research funding from the National Institutes of Health for clinical trials related to psychological treatments for youth with epilepsy. These clinical trials follow CONSORT reporting standards and are ethics committee‐approved and peer‐reviewed to address any potential bias. Author Wagner receives research funding from the National Institutes of Health for clinical trials related to psychological treatments for youth with epilepsy. These clinical trials follow CONSORT reporting standards and are ethics committee‐approved and peer‐reviewed to address any potential bias. Author LaFrance receives author royalties for the seizure treatment book Taking Control of Your Seizures: Workbook, Oxford University Press, 2015. He studies evidence‐based nonpharmacological interventions for people with seizures and receives funding from the US Congressionally Directed Medical Research Programs (CDMRP) (Award Number W81XWH‐17‐1‐0619) that are ethics committee‐approved and peer‐reviewed to address any potential bias. Author Reuber is responsible for developing and supervising a team of psychotherapists working in a clinical neurology department and provides treatment to people with epilepsy. He therefore has an interest in demonstrating the effectiveness of psychotherapy. However, this potential bias is outweighed by his interest in the development of evidence‐based treatments, encouraging him to assess the existing evidence as objectively and impartially as possible. Author Tang works as a clinical psychologist in a public hospital in Hong Kong under the Hospital Authority (“HA”). The views expressed are those of the author, and not necessarily those of the HA. She has received honoraria for speaking, and educational activities not funded by industry. She has no conflicts of interest to report. Author Valente receives personal grant from the National Council for Scientific and Technological Development (307817/2019‐9) and is responsible for four projects with grants from The Sao Paulo Research Foundation (2019/04956‐8; 2018/23798‐1; 2018/03228‐6; 2017/09870‐9). Author Donald works in a clinical environment where she sees and manages children with epilepsy, developmental, and intellectual disabilities and challenging behavior. She has received funding for unrelated research projects supported by the South African National Research Foundation and Medical Research Council, by an Academy of Medical Sciences Newton Advanced Fellowship (NAF002\1001), funded by the UK Government’s Newton Fund, by the National Institutes of Health (NIAAA, NIMH); UK MRC (MR/T002816/1) and by the US Brain and Behaviour Foundation Independent Investigator grant (24467). She has no conflicts of interest. Author Goldstein has received honoraria for speaking, and educational activities not funded by industry; she receives royalties from the publication of Clinical Neuropsychology (Wiley, 2004, 2013) and The Clinical Psychologist's Handbook of Epilepsy Cull 1997. This work represents independent research part‐funded by the NIHR Maudsley Biomedical Research Centre (BRC) at South London and Maudsley NHS Foundation Trust and the Institute of Psychiatry, Psychology and Neuroscience, King’s College London. The views expressed are those of the author, and not necessarily those of the NHS, the NIHR or the Department of Health., (© 2020 The Authors. Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.)

Background: COVID-19 pandemic has changed the way to manage MS and NMOSD, not only concerning treatment, but also regarding social distance and the increasing use of telemedicine (TM) to minimize the risk of infection. Currently, there is no data regarding TM among MS and NMOSD South American experts., Objective: To investigate TM experiences from South American MS and/or NMOSD experts in the follow-up of their patients focusing on TM., Methods: A cross-sectional study was performed. 141 MS and/or NMOSD experts from Argentina, Chile, Colombia and Brazil were invited to answer an web-based survey., Results: A total of 129 (91.48 %) experts completed the survey. Only 19.4% had experience in TM previous COVID-19 pandemic, while 79.8% are currently using TM, most using video call (52.3%). Using TM, 44.1% of the experts were able to perform neurological examination, 85.6% believed to be able to identify a relapse, 48.6% use Patient Determined Disease Steps and 38.7% kept using the conventional Expanded Disability Status Scale., Conclusion: Our survey demonstrates preparedness and responsiveness among South American MS and/or NMOSD experts.  Despite scarce prior TM experience, most experts felt confident to use TM as a new tool for monitoring their patients., (Copyright © 2020. Published by Elsevier B.V.)

Objective: To characterize reimbursement trends and providers for chronic migraine (CM) chemodenervation treatment within the Medicare population since the introduction of the migraine-specific CPT code in 2013., Methods: We describe trends in procedure volume and total allowed charge on cross-sectional data obtained from 2013 to 2018 Medicare Part B National Summary files. We also utilized the 2017 Medicare Provider Utilization and Payment Data to analyze higher volume providers (>10 procedures) of this treatment modality., Results: The total number of CM chemodenervation treatments rose from 37,863 in 2013 to 135,023 in 2018 in a near-linear pattern (r = 0.999) and total allowed charges rose from ~$5,217,712 to $19,166,160 (r = 0.999). The majority of high-volume providers were neurologists (78.4%; 1060 of 1352), but a substantial proportion were advanced practice providers (APPs) (10.2%; 138 of 1352). Of the physicians, neurologists performed a higher mean number of procedures per physician compared to non-neurologists (59.6 [95% CI: 56.6-62.6] vs. 45.4 [95% CI: 41.0-50.0], p < 0.001). When comparing physicians and APPs, APPs were paid significantly less ($146.5 [95% CI: $145.6-$147.5] vs. $119.7 [95% CI: $117.6-$121.8], p < 0.001). As a percent of the number of total beneficiaries in each state, the percent of Medicare patients receiving ≥1 CM chemodenervation treatment from a high-volume provider in 2017 ranged from 0.024% (24 patients of 98,033 beneficiaries) in Wyoming to 0.135% (997 of 736,521) in Arizona, with six states falling outside of this range., Conclusion: Chemodenervation is an increasingly popular treatment for CM among neurologists and other providers, but the reason for this increase is unclear. There is substantial geographic variation in its use., (© 2020 American Headache Society.)

Background: Medical education, residency training, and the structure of child neurology residency training programs are evolving. We sought to evaluate how training program selection priorities of child neurology residency applicants have changed over time., Methods: An electronic survey was sent to child neurology residents and practicing child neurologists via the Professors of Child Neurology distribution list in the summer of 2018. It was requested that the survey be disseminated to current trainees and alumni of the programs. The survey consisted of seven questions assessing basic demographics and a list of factors applicants consider when choosing a residency., Results: There were 284 responses with a higher representation of individuals matriculating into residency in the last decade. More recent medical school graduates had a lower probability of considering curriculum as an important factor for residency selection (odds ratio [OR], 0.746; 95% confidence interval [95% CI], 0.568 to 0.98; P = 0.035) and higher priority placed on interaction with current residents over the course of the interview day (OR, 2.207; 95% CI, 1.486 to 3.278; P < 0.0001), sense of resident happiness and well-being (OR, 2.176; 95% CI, 1.494 to 3.169; P < 0.0001), and perception of city or geography of the residency program (OR, 1.710; 95% CI, 1.272 to 2.298; P < 0.001)., Conclusions: Over time, child neurology residency applicants are putting more emphasis on quality of life factors over curriculum. To accommodate these changes, child neurology residency programs should prioritize interactions with residents during the interview process and resident wellness initiatives throughout residency training., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Objective: To assess the effect of the coronavirus disease 2019 (COVID-19) outbreak on neurology resident training in Italy., Method: We created a web-based survey regarding changes in clinical, research, and educational activity of neurology trainees in Italy during the COVID-19 pandemic and the preventive measures undertaken by local institutions to reduce the risk of contagion., Results: Seventy-nine residents working in Italy completed the survey. A total of 87.3% of trainees reported a substantial reduction in their neurologic duties since COVID-19 appeared in Italy, and 17.8% were also recruited or volunteered for COVID-19-dedicated wards. Likewise, more than 60% of trainees experienced a reduction or interruption in research activity. As regards the perceived effect of the COVID-19 outbreak on their neurologic training, almost 70% of surveyed trainees believe that the COVID-19 pandemic had or will have a negative effect on their formation as neurologists, for different reasons. Furthermore, trainees reported a consistent exposure (69.6%) to confirmed positive COVID-19 cases at work, with divergent surveillance and preventive measures taken by local institutions., Conclusions: Overall, the survey shows that the COVID-19 pandemic in Italy has had a subjective negative effect on neurology residents on didactics, clinical, and research training as well as training abroad. The COVID-19 outbreak poses many challenges to academic institutions and training programs, and addressing these issues promptly is crucial to ensure continued quality of trainees' neurologic education. Sharing solutions and ideas among the international neurologic community might help neurology training programs worldwide to better counteract these problems., (© 2020 American Academy of Neurology.)

Background: Domperidone is used to treat gastrointestinal symptoms in patients with Parkinson's disease. Because of an increased risk of cardiac adverse events, the European Medicines Agency has issued recommendations restricting its use mainly in terms of age, dose, and treatment duration., Objective: The aim of this study was to investigate current prescription practices of domperidone in Parkinson's disease among French neurologists., Methods: A cross-sectional study based on a questionnaire was conducted among French neurologists from Parkinson's disease expert centers from the French NS-Park/FCRIN network, general hospitals, and private practice., Results: Among the 253 neurologists who completed the questionnaire, 86 (34%) were physicians from expert centers and 167 (66%) were from other healthcare settings; 209 (83%) were aware of recommendations restricting domperidone use. The majority of neurologists (92%) declared prescribing domperidone regardless of the age of the patients. Sixty-one percent of neurologists prescribed domperidone beyond 7 days in newly diagnosed patients, 33% in patients with orthostatic hypotension, and 79% in patients receiving continuous apomorphine treatment. They did not follow the recommendation on posology in newly diagnosed patients (7% of neurologists), patients with orthostatic hypotension (10%), and patients receiving continuous apomorphine therapy (25%). Finally, only 58% of neurologists declared taking specific precautions before prescribing domperidone., Conclusions: These findings show most French neurologists who responded to our questionnaire do not fully follow the restrictions on domperidone use, particularly in terms of treatment duration, and in patients receiving continuous apomorphine treatment. This may reflect the unmet need to prevent nausea in patients with Parkinson's disease treated with dopaminergic drugs, particularly continuous apomorphine therapy.

Ketogenic therapy is now an accepted treatment for pediatric and adult patients with medically refractory epilepsy. 1-3 However, young adults treated with a ketogenic diet face unique challenges when transitioning to adult neurology providers. 4 The variable acceptance of dietary therapy, paucity of nutritionists and adult neurology providers educated in dietary therapy, and lack of insurance coverage for dietary education may interfere with transition to adult care. In addition, patients in this life stage may just begin to independently seek medical care, cook meals, and manage medications, making strict dietary limitations difficult. 4 In this worldwide study, we surveyed 191 pediatric and adult neurology providers who prescribe ketogenic dietary therapy for epilepsy. Our response rate was 39% with a total of 74 valid surveys received. Our goal was to identify perceived barriers that inhibit effective transition and successful continuation of dietary therapy during transition to adult care. We found that dietary therapy is a more accepted treatment of intractable epilepsy in children (84%) than adults (17%) in all geographic areas. Although half of pediatric neurology providers (50%) transition their young adult patients on dietary therapy to adult providers, only 23% have a documented transition plan or a formal transition protocol. Most (87%) pediatric providers who prescribe the ketogenic diet feel the lack of sufficient adult providers who prescribe dietary therapy as a barrier to transitioning adolescent and young adult patients.

The diagnosis and treatment of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is often a challenge. The clinical presentation is diverse, accurate biomarkers are lacking, and the best strategy to initiate and maintain treatment is unclear. The aim of this study was to determine how neurologists diagnose and treat CIDP. We conducted a cross-sectional survey on diagnostic and treatment practices among Dutch neurologists involved in the clinical care of CIDP patients. Forty-four neurologists completed the survey (44/71; 62%). The respondents indicated to use the European Federation of Neurological Societies/Peripheral Nerve Society (EFNS/PNS) 2010 CIDP guideline for the diagnosis in 77% and for treatment in 50%. Only 57% of respondents indicated that the presence of demyelinating electrophysiological findings was mandatory to confirm the diagnosis of CIDP. Most neurologists used intravenous immunoglobulins (IVIg) as first choice treatment, but the indications to start, optimize, or withdraw IVIg, and the use of other immune-modulatory therapies varied. University-affiliated respondents used the EFNS/PNS 2010 diagnostic criteria, nerve imaging tools, and immunosuppressive drugs more often. Despite the existence of an international guideline, there is considerable variation among neurologists in the strategies employed to diagnose and treat CIDP. More specific recommendations regarding: (a) the minimal set of electrophysiological requirements to diagnose CIDP, (b) the possible added value of nerve imaging, especially in patients not meeting the electrodiagnostic criteria, (c) the most relevant serological examinations, and (d) the clear treatment advice, in the new EFNS/PNS guideline, would likely support its implementation in clinical practice., (© 2020 The Authors. Journal of the Peripheral Nervous System published by Wiley Periodicals LLC. on behalf of Peripheral Nerve Society.)

Background: During the COVID-19 pandemic, telehealth modalities have come to prominence as a strategy for providing patient care when in-person care provision opportunities are limited. The degree of adoption by neuro-ophthalmologists has not been quantified., Methods: Telehealth utilization pre-COVID-19 and peri-COVID-19 was surveyed among practicing neuro-ophthalmologists in and outside the United States using an online platform. Demographics, perceived benefits, barriers, and utility for different neuro-ophthalmic conditions were collected. Data collection occurred over a 2-week period in May 2020., Results: Two hundred eight practicing neuro-ophthalmologists (81.3% United States, 50.2% females, age range <35 to >65, mode 35-44 years) participated in the survey. Utilization of all telehealth modalities increased from pre-COVID to peri-COVID (video visit 3.9%-68.3%, P < 0.0005, remote interpretation of testing 26.7%-32.2%, P = 0.09, online second opinion 7.9%-15.3%, P = 0.001, and interprofessional e-consult 4.4%-18.7%, P < 0.0005, McNemar). The majority selected access, continuity, and patient efficiency of care as benefits and data quality as a barrier. Telehealth was felt to be most helpful for conditions relying on history, external examination, and previously collected ancillary testing and not helpful for conditions requiring funduscopic examination., Conclusions: Telehealth modality usage by neuro-ophthalmologists increased during the COVID-19 pandemic. Identified benefits have relevance both during and beyond COVID-19. Further work is needed to address barriers in their current and future states to maintain these modalities as viable care delivery options.

Objective: The prevalence of autism spectrum disorder (ASD) has increased 10-fold in the past 40 years, and disparities have been noted by race/ethnicity and socioeconomic status, prompting concern about diagnostic accuracy. Provider perceptions of ASD diagnostic accuracy are not known. We conducted a survey of providers who diagnose ASD assessing how nonclinical factors might affect ASD diagnostic rates., Methods: The mixed-mode survey was sent to the members of the Society of Developmental and Behavioral Pediatrics with clinical interest in ASD (n = 400). Respondents used a Likert-type scale to address how often they and their colleagues overdiagnosed or underdiagnosed ASD. They were also asked how families grouped by race/ethnicity, education, socioeconomic status, and urbanicity perceived an ASD diagnosis., Results: Sixty-three percent of providers completed the survey. Eight point seven percent of providers self-reported that they overdiagnose ASD at least sometimes. However, 58% of providers reported that local colleagues overdiagnose ASD at least sometimes. Seven point eight percent of providers self-reported underdiagnosing ASD at least sometimes and cited parents not wanting a diagnosis as one of the most common reasons they may underdiagnose. Providers reported that non-white and rural families were more likely to think that ASD diagnosis was "a bad thing" than "a good thing" than white and urban and suburban families, respectively., Conclusion: Providers report moderate rates of ASD misdiagnosis and perceive differences in diagnostic preferences according to family characteristics. The study results may help explain the trends and disparities in ASD diagnosis.

Purpose: Epilepsy patients consider driving issues to be one of their most serious concerns. Ideally, decisions regarding fitness to drive should be based upon thorough evaluations by specialists in epilepsy care. In 2009, an EU directive was published aiming to harmonize evaluation practices within European countries, but, despite these recommendations, whether all epileptologists use the same criteria is unclear. We therefore conducted this study to investigate routine practices on how epileptologists at European epilepsy centers evaluate fitness to drive., Methods: A questionnaire was sent to 63 contact persons identified through the European Epi-Care and the E-pilepsy network. The questionnaire addressed how fitness-to-drive evaluations were conducted, the involvement of different professionals, the use and interpretation of EEG, and opinions on existing regulations and guidelines., Results: The questionnaire was completed by 35 participants (56 % response rate). Results showed considerable variation regarding test routines and the emphasis placed on the occurrence and extent of epileptiform discharges revealed by EEG. 82 % of the responders agreed that there was a need for more research on how to better evaluate fitness-to-drive in people with epilepsy, and 89 % agreed that regulations on fitness to drive evaluations should be internationally coordinated., Conclusion: Our survey showed considerable variations among European epileptologists regarding use of EEG and how findings of EEG pathology should be assessed in fitness-to-drive evaluations. There is a clear need for more research on this issue and international guidelines on how such evaluations should be carried out would be of value., (Copyright © 2020 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Purpose: The aim of this study was to determine and compare the waiting times for surgical assessment, neuropsychological testing and epilepsy surgery between people with epilepsy who live in cities with available neurologists vs not., Methods: We reviewed all cases referred for epilepsy surgery between 2007 and 2017 at the Saskatchewan Epilepsy Program Royal University Hospital (SEP) (n = 98; Saskatchewan, Canada). Mann-Whitney U test was used to compare wait times from first diagnosis of epilepsy to epilepsy surgery between patients who live in cities with neurologists (mainly urban areas) vs cities without neurologists (mainly rural areas)., Results: The mean age of patients who enrolled in SEP was 37.8 ± 12.8 years. The median wait time from date of epilepsy diagnosis to referral was 9.5 years in Saskatoon and Regina (cities with available neurologists) and 14 years in other areas of Saskatchewan (small cities and rural areas with no available neurologists) (p = 0.03). The median wait time from date of epilepsy diagnosis to first consult with the epileptologist was 10 years in Saskatoon and Regina and 15.5 years in other areas of Saskatchewan (p = 0.03). The median wait time from date of first diagnosis to epilepsy surgery was 13.2 years in Saskatoon and Regina and 18.2 years in other areas of Saskatchewan (p = 0.05)., Conclusion: A notable difference was observed in surgical wait times between patients who live in cities with available neurologists compared with people living in rural areas and cities with no neurologists. This suggests that delayed surgical treatment for epilepsy is related with the availability of neurologists., Competing Interests: Declaration of Competing Interest This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors., (Copyright © 2020 British Epilepsy Association. All rights reserved.)

Objective: Patients with seizures or status epilepticus (SE) access the hospital through emergency departments and may be admitted into different wards according to the level of care required. Clinicians with different expertise are in charge of taking critical therapeutic decisions. To date, very few studies have investigated the stage at which these patients are referred to neurologists or epileptologists and how guideline recommendations are applied in clinical practice., Methods: A survey was used to investigate how patients with epileptic seizures or SE are managed in emergency and in subsequent hospital pathways in Italy., Results: One hundred and seventy-seven physicians (mainly neurologists) from all parts of Italy filled in a questionnaire. Less than half of the participants (35%) answered that, in their hospital, patients with epilepsy were managed by epileptologists. The percentages were lower for patients presenting with acute seizures (21%) or SE (16%). Diagnostic, therapeutic, and assistance pathways (PDTA) for patients presenting with seizure(s) or SE were available for both conditions in about 50% of cases, while, in the rest of the hospitals, participants indicated informal agreements (about 25% of cases) or lack of any agreement (about 25% of cases) between clinicians. Professionals more often involved in PDTA were epileptologists/neurologists, emergency physicians, and intensivists. More than half ot the participants (55%) thought that organizational issues are the most important criticalities for such patients and need to be improved (61%)., Significance: There is a high variability in hospital clinical pathways for epilepsy in Italy.

Background: In 2001, we conducted a survey on use of complementary and alternative medicine (CAM) in people with multiple sclerosis (pwMS) in Oregon and Southwest Washington to treat their disease., Objectives, Methods: In 2018, we administered a revised survey in the same region to describe updated patterns of CAM use in pwMS and to compare changes in use, perceived benefit, and patterns of communication between participants and providers regarding CAM over the past 17 years., Results: 81% of respondents in 2018 (n = 1014) used a CAM supplement (vitamins, minerals, herbs), 39% used mind-body therapies (mindfulness, massage), 41% used specific diet, and 81% used exercise to treat their multiple sclerosis. Since 2001, use of supplements, exercise, and mind-body therapies have increased (65% to 81%, 67 to 81%, and 14% to 39%). Participants were also nine times more likely to speak to their neurologists about CAM use (6.7% to 55.4%). In 2018, factors associated with CAM use included female sex, progressive disease, and longer time since multiple sclerosis diagnosis., Conclusion: These findings highlight the high and increasing prevalence of CAM use in pwMS and factors associated with CAM use, and underscore the importance of research to investigate safety and efficacy of these therapies., Competing Interests: Declaration of Competing Interest The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Drs. Rice and Cameron receive consulting fees from Adamas Pharmaceuticals and from GW Pharmaceuticals; Spain reports personal fees from TG Therapeutics outside the submitted work. The other authors have no disclosures or conflicts of interest., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Objective: Patients with seizures and epilepsies comorbid with cerebrovascular disorders (CVDs) or brain tumors (BTs) are managed by different specialists, including neurologists with expertise in epilepsy (epileptologists), CVDs, and neuro-oncology, as well as neurologists without special expertise (general neurologists), and also emergency room physicians (EPs), intensive care physicians, and neurosurgeons. It has never been studied how these specialists interact for the treatment of seizures or epilepsy in these patients., Methods: A survey was used to investigate how patients with such comorbidities are managed in hospitals in Italy., Results: One hundred and twenty-eight specialists from hospitals in all parts of Italy filled in a questionnaire. Epileptologists were in charge of treatment of epilepsy in about 50% of cases while acute seizures were treated mainly by general neurologists (52% of cases). Diagnostic, therapeutic, and assistance pathways (PDTAs) for CVD and BT epilepsies were declared by physicians in about half of the hospitals while in about a quarter, there were only informal agreements and, in the remaining hospitals, there were no agreements between specialists. CVD neurologists, specialists in internal medicine, and EP were most often in charge of treatment of epilepsy comorbid with CVD. General neurologists, neuro-oncologists, and neurosurgeons were included in teams that manage BT epilepsies while epileptologists were included only in a small percentage of hospitals., Conclusions: Clinical decisions on epilepsy or seizures in patients with such comorbidities are often handled by different specialists. A new team culture and PDTAs are needed to guarantee high standards of diagnostic and therapeutic procedures.

Rare neurological diseases (RNDs) are a heterogeneous group of disorders mainly affecting the central and peripheral nervous systems, representing almost 50% of all rare diseases; this explains why neurologists are very often involved in their diagnosis, treatment and research. The purpose of this study was to quantitatively describe the awareness of RNDs among the neurological community of the Italian Society of Neurology (SIN). A survey of the Italian Neurogenetics and Rare diseases group of the SIN, similar to what was submitted to the members of the EAN Task Force on Rare Neurologic Diseases and to EAN Panels Scientific Committee Management Groups, was launched in January 2019 in order to verify the specific Italian situations and possibly the regional differences. Answers were collected online. We observed that Italian Members of the SIN Neurogenetics and Rare Neurologic Diseases Scientific Group are well aware of the burden posed by RNDs but at the national and regional level, the relative awareness is sketchy and disparate. Although many national initiatives have been undertaken to facilitate the diagnosis and management in Italy, our survey reveals that much works has to be done in supporting RNDs patients, including a deeper collaboration between politics, universities and all stakeholders in the field.

Purpose: Three Chapters of the Commission of the East Mediterranean Affairs (CEMA) of the ILAE conducted a survey to assess the availability of drugs used for the treatment of generalized convulsive status epilepticus (GCSE) across the CEMA countries and to evaluate the treatment choices of adult and pediatric neurologists for the treatment of this condition., Method: The web-based survey consisted of two similar vignettes of GCSE in a child and an adult. The questions evaluated the sequential drugs of choice based on drug availability and with the assumption that all drugs were at the disposition of the neurologists. The neurologists were also asked about the timing of introduction of anesthetic drugs and how they monitor patients in drug induced coma., Results: Our data showed that the availability of drugs differ substantially across CEMA countries. A benzodiazepine and phenytoin/phenobarbital were the initial drugs of choice for the majority of adults and pediatric neurologists. In cases of refractory status, most neurologists would use a third agent before proceeding to treatment with an anesthetic agent. Although the vast majority would prefer to monitor patients in drug-induced coma with continuous EEG, only 38% are using this modality because of its unavailability at their institutions., Conclusions: Our data emphasize that an algorithm for the treatment of GCSE in the CEMA countries should be flexible and should propose different treatment options at each step of the protocol that are based on the best available data while taking into consideration the drug availability across the CEMA countries., (Copyright © 2020 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)

Purpose: To quantitatively and qualitatively assess the impact of attending neuroradiology coverage on radiology resident perceptions of the on-call experience, referring physician satisfaction, and final report turnaround times., Materials and Methods: 24/7/365 attending neuroradiologist coverage began in October 2016 at our institution. In March 2017, an online survey of referring physicians, (emergency medicine, neurosurgery, and stroke neurology) and radiology residents was administered at a large academic medical center. Referring physicians were queried regarding their perceptions of patient care, report accuracy, timeliness, and availability of attending radiologists before and after the implementation of overnight neuroradiology coverage. Radiology residents were asked about their level of independence, workload, and education while on-call. Turnaround time (TAT) was measured over a 5-month period before and after the implementation of overnight neuroradiology coverage., Results: A total of 28 of 64 referring physicians surveyed responded, for a response rate of 67%. Specifically, 19 of 23 second (junior resident on-call) and third year radiology residents (senior resident on-call) replied, 4 of 4 stroke neurology fellows replied, 8 of 21 neurosurgery residents, and 16 of 39 emergency medicine residents replied. Ninety-five percent of radiology residents stated they had adequate independence on call, 100% felt they have enough faculty support while on call, and 84% reported that overnight attending coverage has improved the educational value of their on-call experience. Residents who were present both before and after the implementation of TAT metrics thought their education, and independence had been positively affected. After overnight neuroradiology coverage, 85% of emergency physicians perceived improved accuracy of reports, 69% noted improved timeliness, and 77% found that attending radiologists were more accessible for consultation. The surveyed stroke neurology fellows and neurosurgery residents reported positive perception of the TAT, report quality, and availability of accessibility of attending radiologist., Conclusions: In concordance with prior results, overnight attending coverage significantly reduced turnaround time. As expected, referring physicians report increased satisfaction with overnight attending coverage, particularly with respect to patient care and report accuracy. In contrast to some prior studies, radiology residents reported both improved educational value of the on-call shifts and preserved independence. This may be due to the tasking the overnight neuroradiology attending with dual goals of optimized TAT, and trainee growth. Unique implementation including subspecialty trained attendings may facilitate radiology resident independence and educational experience with improved finalized report turnaround., (Published by Elsevier Inc.)

Purpose: To understand the experiences with and perspectives of neurologists about the use of medical cannabis in the treatment of pediatric drug-resistant epilepsy., Methods: In this qualitative study, we interviewed neurologists who provide care to children with drug-resistant epilepsy in Canada. Through semi-structured telephone interviews, we sought participants' views about and experiences with medical cannabis for the treatment of drug-resistant epilepsy in children. Here we present a thematic summary of the interviews., Results: The 12 interviewed neurologists generally perceived medical cannabis as a viable treatment option for children with drug-resistant epilepsy; however, participants identified important gaps in the evidence and implications for their practices. Six themes were generated from the content of the interviews: learning about medical cannabis; perceptions about medical cannabis; discussing medical cannabis with parents; experiences with medical cannabis authorization; barriers to authorizing medical cannabis; and the impact of medical cannabis on clinical care. Of note, while some neurologists took on all aspects of the children's care, including medical cannabis, others referred interested families to non-neurology health care professionals., Conclusion: Our findings highlight the diverse opinions and experiences of neurologists in Canada with medical cannabis for the treatment of drug-resistant epilepsy in children, including with the authorization process and caring for children using medical cannabis. Additional education about medical cannabis may be warranted, in order to better prepare neurologists to have informed and open conversations with parents about this treatment option and to provide care for children using medical cannabis., Competing Interests: Declaration of Competing Interest Bláthnaid McCoy is a co-author on the Canadian League Against Epilepsy’s position statement on the use of medical cannabis for the treatment of epilepsy in Canada. The other authors have no conflicts of interest to report., (Copyright © 2020 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)

Objective: The modified Rankin Scale is a functional outcome measure that disproportionately represents motor deficits. We hypothesize that among physicians who most commonly use the modified Rankin Scale to counsel patients on neurological treatment options, personal perception of acceptable or optimal outcome may be discordant with those described in clinical trials., Methods: A three-question anonymous voluntary survey was emailed to academic and community practicing neurologists and board-eligible or board-certified neurology fellows inquiring about their personal perception of a better quality of life between two choices featuring clinical scenarios that would qualify as modified Rankin Scale 2 and 4 disability outcome scores., Results: Sixty-nine percent of participants were 30-45 years old, 24% were 45-60 years old, and 7% were over 60 years old. Most responders were general neurologists (31.3%). The remaining responders represented multiple subspecialties including neurocritical care, vascular neurology, neurohospitalist medicine, neuromuscular neurology, neurophysiology, child neurology, neuro-oncology, headache, neuroimmunology, movement disorders, and palliative care medicine. Forty-four of 45 neurologists (97.7%) stated they would choose needing a wheelchair if still able to function at their cognitive baseline at work (p < 0.000001). One responder preferred to get around without assistance, despite new cognitive symptoms that would preclude them from working as a physician., Conclusions: The modified Rankin Scale may not adequately represent preferred outcomes among neurology specialists, particularly with respect to cognitive symptoms. Future studies are needed to characterize long-term cognitive outcomes in patients with acute stroke-related conditions.

Background: Pediatric patients with epilepsy are at risk for low vitamin D levels, increasing the risk for bone fractures, yet standardized bone health screening is not part of routine care., Methods: We surveyed pediatric neurologists (n = 68) at our center regarding screening practices, using an 11-item survey; constructed a bone health treatment algorithm; and developed a training intervention to improve screening rates., Results: The overall survey response rate was 47%. Among respondents, 64% estimated that they screened for bone health less than 25% of the time. Chart review before the intervention demonstrated an overall screening rate of 25.1% (n = 50/199). One year after implementation of a standardized algorithm, the overall screening rates increased to 53.8% (n = 100/186). The frequency of prescribing vitamin D for patients treated with antiepileptic medications increased among general neurologists (preintervention rate 16%, postintervention rate 51%, P < 0.01) as well as among epileptologists (preintervention rate 45%, postintervention rate 57%, P = 0.04)., Conclusion: In a relatively short follow-up period, there were significant changes in care patterns regarding screening for bone health in pediatric patients with epilepsy. Further implementation measures are underway to increase bone health screening and care in this population., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: Parkinson's disease (PD) has been hypothesized to be associated with certain personality traits, including conscientiousness and punctuality. However, research aimed at quantifying these traits is largely derived from questionnaire-based personality inventories rather than real-world observations., Objective: To explore the presence of a parkinsonian personality profile by assessing the no-show rate of patients with PD versus other neurological disorders., Methods: We extracted data from our electronic health record for all neurology appointments over a 78-month interval. Additionally, we obtained primary care appointment data for the same patients over the same timeframe. For each appointment we collected appointment date/time, check-in time, provider, age, sex, insurance type, days between appointment date and scheduling, diagnosis code, and no-show status., Results: 19,433 unique patients (400 with PD) accounting for a total of 252,347 outpatient appointments were included in our analysis. The overall no-show rate for PD patients was 3% versus 7.4% for patients with other neurologic disorders (OND). No show rates for PD patients were lower than those with OND for both neurology appointments (2.7% versus 13.6%) and for primary care visits (3.1% versus 5.9%)., Conclusions: Patients with PD have lower no-show rates than patients with OND. Additionally, the no-show rate for patients with PD did not differ between their neurology and primary care appointments, confirming that patient's personality rather than provider traits account for this difference, and supporting the presence of a parkinsonian personality.

The Zika virus (ZIKV) epidemic in Brazil in 2015-2016 was followed by an increase in the incidence of patients with Guillain-Barré syndrome (GBS). With this national survey study, we aimed to gain a better understanding of how neurologists in Brazil are currently diagnosing and treating patients with GBS, and how this increase in incidence has impacted the management of the disease. The questionnaire consisted of 52 questions covering: personal profile of the neurologist, practice of managing GBS during and outside of the ZIKV epidemic, and limitations in managing GBS. All 3264 neurologists that were member of the Brazilian Academy of Neurology at the time of the study were invited to participate. The questionnaire was fully answered by 171 (5%) neurologists. Sixty-one percent of neurologists noticed an increase in patients with GBS during the ZIKV epidemic, and 30% experienced an increase in problems in managing GBS during this time. The most important limitations in the diagnosis and management of GBS included the availability of nerve conduction studies (NCS), beds in the Intensive Care Unit (ICU) and referral to rehabilitation centers. Most neurologists did not use a protocol for treating patients with GBS and the treatment practice varied. Increasing availability of NCS and beds in the ICU and rehabilitation centers, and the implementation of (inter)national guidelines, are critical in supporting Brazilian neurologist in their management of GBS, and are especially important in preparing for future outbreaks., (© 2019 The Authors. Journal of the Peripheral Nervous System published by Wiley Periodicals, Inc. on behalf of Peripheral Nerve Society.)

Purpose: We investigated neurologists' experience of participating in the large CODES trial involving around 900 adults with dissociative seizures which subsequently evaluated the effectiveness of tailored cognitive behavioural therapy (CBT) plus standardised medical care versus standardised medical care alone in 368 patients with dissociative seizures., Method: We asked all neurologists referring patients with dissociative seizures to the CODES study to complete a 43-item online survey. This examined neurologists' (i) demographics, (ii) knowledge of dissociative seizures before and after their involvement in the CODES trial, (iii) clinical practice before, during and since their involvement, and (iv) their experience of the CODES trial., Results: Forty-three (51%) neurologists completed the questionnaire. Only about half of neurologists could make referrals to psychological intervention specific for dissociative seizures before and after the trial. One-third of doctors reported having changed their referral practice following their involvement. The majority (>69%) agreed that patient satisfaction with different aspects of the trial was very high, and 83.7% thought that it was easy to recruit patients for the study. Over 90% agreed they would like the treatment pathway to continue. Respondents found different elements of the trial useful, in particular, the patient factsheet booklet (98%), diagnosis communication advice (93%) and the CBT package (93%)., Conclusions: Neurologists participating in CODES generally found it easy to recruit patients and perceived patient satisfaction as very high. However, 46.5% of neurologists could not offer psychotherapy once the trial had finished, suggesting that problems with lack of access to psychological treatment for dissociative seizures persist., (Copyright © 2019 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: This study aimed to quantify the diagnostic pathway from cognitive impairment (CI) to dementia in Japan., Methods: This was a real-world, cross-sectional survey of patients with CI and their physicians., Results: Data for 1107 patients were provided by 106 physicians. Mean time from initial symptoms to the first consultation was 7.4±6.9 months; 42% of patients had moderate/severe CI at first consultation. Mean time from the first consultation to formal diagnosis was 2.9±11.0 months (1.9±8.8 mo if not referred to a secondary physician, and 5.1±14.6 mo if referred). Time from the first consultation to diagnosis was shorter with more severe CI at first consultation (P=0.0072). The highest proportion of patients were diagnosed by neurologists (45.8%). Tests or scales were used to aid diagnosis in 81.2% of patients. There was no association of disease severity and referral to a secondary physician; 30.9% of patients were referred, the majority (57.7%) to a neurologist., Conclusions: A substantial proportion of patients with dementia in Japan experience CI for some time before consulting a physician. Government policy to increase public understanding and awareness of dementia, and a proposed dementia screening system, should increase the proportion of individuals consulting physicians before disease progression.