Assessing expert reliability in determining intracranial EEG channel quality and introducing the automated bad channel detection algorithm.

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.

Delivering the diagnosis of multiple system atrophy: a multicenter survey on Japanese neurologists' perspectives.

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.

Racial, ethnic, and rural disparities in distance to physicians among decedents with Alzheimer's disease and related dementias in Washington State.

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.

Real-life management of patients with mild cognitive impairment: an Italian survey.

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.

Multiple Sclerosis Multidisciplinary Care: A National Survey and Lessons for the Global Community.

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.

Multi-actor system dynamics in access to disease-modifying treatments for multiple sclerosis in Southeast Asia: A regional survey and suggestions for improvement.

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.

Determining the impact of specialized care on health outcomes and health care utilization in Parkinsonism.

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.

Masking for School-Age Children With Epilepsy: We Do Have Consensus!

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.

Pediatric Neurologists' Perspectives on Sexual and Reproductive Health Care for Adolescent and Young Adult Women With Epilepsy and Intellectual Disability.

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.

North American survey on impact of the COVID-19 pandemic shutdown on DBS care.

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.

Content Validation of Clinician-Reported Items for a Severity Measure for CDKL5 Deficiency Disorder.

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.

Immigrant Neurologists in the Physician-Scientist Pipeline: An Intervenable Stenosis.

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.

Consensus disease definitions for neurologic immune-related adverse events of immune checkpoint inhibitors.

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.

Quality of Neurologic Care in the United States: Initial Report From the Axon Registry.

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.

Epilepsy care and COVID-19: A cross-sectional online survey from Lithuania.

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.

Managing depression and anxiety in people with epilepsy: A survey of epilepsy health professionals by the ILAE Psychology Task Force.

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.

Impact of COVID-19 pandemic on epilepsy practice in India: A tripartite survey.

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.

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

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

Estudio DISCREPA: tratamiento de la enfermedad de Parkinson avanzada y utilización de terapias de segunda línea en Cataluña / DISCREPA study: treatment of advanced Parkinson's disease and use of second-line treatments in Catalonia

INTRODUCCIÓN: El tratamiento de la enfermedad de Parkinson (EP) es complejo y la instauración de terapias de segunda línea en la EP avanzada sigue siendo controvertida. OBJETIVO: Analizar la asistencia de pacientes con EP en Cataluña, con especial atención a la utilización de las terapias de segunda línea en la EP avanzada. Sujetos y métodos: Encuesta en línea autoadministrada a través de la Societat Catalana de Neurología a neurólogos de Cataluña que atendían a pacientes con EP. RESULTADOS: Participaron 72 neurólogos que visitaban una media mensual de 38 pacientes con EP (el 37,3% con complicaciones motoras). El 86% preguntaba rutinariamente por complicaciones motoras. Los principales motivos para indicar terapias de segunda línea fueron la discapacidad en off (83,1%), el impacto de las discinesias (76,9%), el impacto del tiempo en off (75,4%) y el tiempo en off (73,8%). El 70% de los neurólogos declaró limitaciones para instaurar terapias de segunda línea: escasez de recursos en su hospital, falta de tiempo para visitar al paciente o para realizar tareas administrativas y falta de soporte de enfermería (33,3%). No se utilizan terapias de segunda línea en el 72% de los pacientes que podrían ser potencialmente candidatos, sobre todo por rechazo del paciente (37,9%). CONCLUSIONES: La mayoría de los neurólogos en Cataluña que visitan pacientes con EP pregunta rutinariamente por complicaciones motoras sin utilizar herramientas específicas. Aunque los neurólogos conocen bien las indicaciones de instauración de terapias de segunda línea, la negativa del paciente, la falta de tiempo y la falta de protocolos asistenciales definidos para derivar a pacientes pueden contribuir a una menor utilización de terapias de segunda línea en la EP avanzada

INTRODUCTION: The treatment of Parkinson's disease (PD) is complex, and the establishment of second-line therapies in advanced PD remains controversial. AIM: To analyze the assistance of patients with PD in Catalonia, with special attention to the use of second-line therapies in advanced PD. SUBJECTS AND METHODS: Online self-administered survey to neurologists in Catalonia who treated patients with PD, through the Catalan Society of Neurology. RESULTS: 72 neurologists who visited a monthly average of 38 PD patients (37.3% motor complications) participated. 86% routinely asked about motor. The main reasons for indicating second-line therapies were disability in off (83.1%), impact of dyskinesias (76.9%), impact of time in off (75.4%) and time in off (73.8%). 70% of neurologists declared limitations to establish second-line therapies: lack of resources in their hospital, lack of time to visit the patient or to perform administrative tasks and lack nursing support. Second-line therapies is not used in 72% of patients who could potentially be candidates, especially due to patient rejection (37.9%). CONCLUSIONS: The majority of neurologists in Catalonia who visit patients with PD routinely ask about motor complications without using specific tools. Although neurologists are well aware of the indications for the establishment of second-line therapies, the refusal of the patient, the lack of time and the lack of defined care protocols to refer patients, they can contribute to a lower use of second-line therapies in advanced PD