AB082. Navigating barriers to epilepsy surgery: a national survey of patient and neurologist perspectives.

BACKGROUND: Potential barriers to epilepsy surgery can be divided into two broad groups: reluctance of patients/caregivers and deficient knowledge of neurologists. Pakistan, in particular, faces an epilepsy surgery treatment gap of 70-94%. This study aimed to assess the knowledge and practice of neurologists and the knowledge of the patients diagnosed with epilepsy to identify the barriers to adequate provision of this modality in Pakistan. METHODS: We conducted a cross-sectional study comprising two surveys. Records of patients diagnosed with epilepsy at our hospital during 2.5 years were retrieved from the Neurophysiology database. The second form was designed for neurologists working in Pakistan. The questionnaires were disseminated via email to neurologists and phone calls to patients. RESULTS: In the patients' survey, we obtained 194 responses from caregivers. The median age of patients was 10 years [interquartile range (IQR): 6-14 years]. We found that 74.2% (n=144) of patients were unaware of surgical options in medically refractory epilepsy (MRE). Therefore, most did not comment on it due to the limited information. Forty-eight patients (24.8%) reported more than 1 seizure per month, and 29 (60.4%) were unaware of the surgical treatment. Seizures were disabling in 88% (n=171) of patients. Patients taking more AEDs were significantly more likely to be aware of surgical options (P=0.001). In the survey from neurologists, only 6.6% (n=4) always discussed epilepsy surgery with MRE patients. Around half of the neurologists, 44.3% (n=27), had never referred a patient for epilepsy surgery. However, 95.1% (n=58) were aware of the under-utilization of epilepsy surgery, and 67.2% (n=41) believed that epilepsy surgery is under-recommended. Almost all neurologists (n=60; 98.4%) believe that comprehensive epilepsy treatment centers are required in the country. CONCLUSIONS: In our survey, we found a lack of awareness in both patients and neurologists to be a major barrier. This contrasts the literature from developed or high-income countries, where physician awareness seems adequate, and stigmas associated with surgery seem to be the major barrier. Multifaceted approaches catered to local concerns are necessary to address these hindrances.

World Federation of Neurology Needs Registry Survey 2021.

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.

Functional neurological disorder in Europe: regional differences in education and health policy.

BACKGROUND: Functional neurological disorder (FND) is a common cause of neurological disability. Despite recent advances in pathophysiological understanding and treatments, application of this knowledge to clinical practice is variable and limited. OBJECTIVE: Our aim was to provide an expert overview of the state of affairs of FND practice across Europe, focusing on education and training, access to specialized care, reimbursement and disability policies, and academic and patient-led representation of people with FND. METHODS: We conducted a survey across Europe, featuring one expert per country. We asked experts to compare training and services for people with FND to those provided to people with multiple sclerosis (MS). RESULTS: Responses from 25 countries revealed that only five included FND as a mandatory part of neurological training, while teaching about MS was uniformly included. FND was part of final neurology examinations in 3/17 countries, unlike MS that was included in all 17. Seventeen countries reported neurologists with an interest in FND but the estimated mean ratio of FND-interested neurologists to MS neurologists was 1:20. FND coding varied, with psychiatric coding for FND impacting treatment access and disability benefits in the majority of countries. Twenty countries reported services refusing to see FND patients. Eight countries reported an FND special interest group or network; 11 reported patient-led organizations. CONCLUSIONS: FND is largely a marginal topic within European neurology training and there is limited access to specialized care and disability benefits for people with FND across Europe. We discuss how this issue can be addressed at an academic, healthcare and patient organization level.

Does serum neurofilament light chain measurement influence therapeutic decisions in multiple sclerosis?

BACKGROUND: The assessment of serum neurofilament light chain (sNfL) concentration in multiple sclerosis (MS) is a useful tool for predicting clinical outcomes and assessing treatment response. However, its use in clinical practice is still limited. We aimed to assess how measurement of sNfL influences neurologists' treatment decisions in MS. METHODS: We conducted a cross-sectional, web-based study in collaboration with the Spanish Society of Neurology. Neurologists involved in MS care were presented with different simulated case scenarios of patients experiencing either their first demyelinating MS event or a relapsing-remitting MS. The primary outcome was therapeutic inertia (TI), defined as the absence of treatment initiation or intensification despite elevated sNfL levels. Nine cases were included to estimate the TI score (range 0-9, where higher values represented a higher degree of TI). RESULTS: A total of 116 participants were studied. Mean age (standard deviation-SD) was 41.9 (10.1) years, 53.4 % male. Seventy-eight (67.2 %) were neurologists fully dedicated to the care of demyelinating disorders. Mean (SD) TI score was 3.65 (1.01). Overall, 92.2 % of participants (n = 107) presented TI in at least 2/9 case scenarios. The lack of full dedication to MS care (p = 0.014), preference for taking risks (p = 0.008), and low willingness to adopt evidence-based innovations (p = 0.009) were associated with higher TI scores in the multivariate analysis after adjustment for confounders. CONCLUSION: TI was a common phenomenon among neurologists managing MS patients when faced with the decision to initiate or escalate treatment based on elevated sNfL levels. Identifying factors associated with this phenomenon may help optimize treatment decisions in MS care.

[Role of Neurologists in Dementia Practice].

The September 2013 issue of this journal contains an article titled "The Role of Neurologists in Dementia Practice" in which I have highlighted the contributions of neurologists to dementia care. I have emphasized the importance of proactive leadership within interdisciplinary teams that include general practitioners and psychiatrists. Following the implementation of the Basic Act on Dementia to Promote an Inclusive Society and advances in medical science, such as introduction of the anti-Alzheimer drug lecanemab, neurologists are expected to play a more active role in dementia management and require more specialized skills. The emergence of lecanemab has led to more direct involvement of neurologists in dementia practice, which has resulted in the emergence of "novice" dementia specialists. However, a shortage of neurologists who specialize in behavioral neurology remains a significant concern in Japan. This challenge is compounded by the inadequate education of general neurologists in this domain, because dementia management requires deep knowledge and skills in behavioral neurology. The most important and urgent issue is to promptly address this shortage. Although neurologists' involvement in dementia practice is attributable to the introduction of lecanemab, I sincerely look forward to neurologists transitioning from "novice" to "real" experts in dementia. I reiterate this call as a recommendation to fellow neurologists, emphasizing the need to evolve into true specialists in the field.

[Role of Neurologists in Stroke Treatment].

Determination of indications for acute reperfusion therapy (intravenous recombinant tissue plasminogen activator administration and mechanical thrombectomy) and identification of stroke mimics and chameleons are essential components of effective stroke treatment. Moreover, neurologists select the appropriate medications and manage the patient's general condition. Therefore, a neurologist's solid diagnostic skills based on neurological symptomatology and an internist's broad knowledge and insight play key roles clinically.

[Peripheral Neuropathy (Numbness): Role of Neurologists as Primary Gatekeepers].

The prevalence of peripheral neuropathies has increased over the years, and novel treatments for management of several neuropathies have emerged over the past decade. Following a literature search of the ICHUSHI database, we observed that recent literature on peripheral neuropathy most frequently includes reports from the orthopedic specialty, followed by studies reported by the neurology service. Notably, the number of studies reported by the neurology departments has increased over the past decade. However, most patients with common peripheral neuropathies do not visit the neurology department. Therefore, it is necessary to highlight the role of neurologists for comprehensive evaluation and management of neuromuscular disorders. This may result in acknowledgement of neurology as the primary gatekeeper of peripheral neurological diseases.

The Neurologist's Guide to Drug Pricing in the United States.

ABSTRACT: As newer, innovative neurology drugs enter the US health care system, neurologists should consider the cost of these treatments in addition to their efficacy, safety, and tolerability. To do so thoughtfully requires an understanding of how prescription drugs are priced in the United States. The process of drug pricing is linked to the distribution supply chain and the many stakeholders involved. Stakeholders include pharmaceutical manufacturers; wholesalers; pharmacies; pharmacy benefit managers; payers, including health insurers; hospital systems; neurologists and other clinicians; and patients. Drug pricing has taken center stage as the Inflation Reduction Act of 2022 has set maximum out-of-pocket expenses for Medicare beneficiaries for the first time in the program's history and limits drug price increases for a select group of Medicare Part D drugs. This article describes the US drug distribution supply chain and its stakeholders and introduces key drug pricing terms; a brief description of how rebates are generally estimated will also be discussed. Finally, as newer neurology outpatient drugs enter the market, the "value" of drugs will be described through cost-effectiveness terminology and their utility for the clinical neurologist.

Opinions and experience of neurologists and neurology trainees in Saudi Arabia on functional neurological disorders: a survey based study.

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.

Seizures, medical child abuse, and the pediatric neurologist.

Previously known as Munchausen syndrome by proxy, medical child abuse is a form of child maltreatment whereby the caregiver creates an environment in which medical care harms or threatens the wellbeing of a child. Approximately 40-50 % of medical child abuse cases involve neurological symptoms, with fabricated or induced seizures accounting for a significant proportion. Identifying fictitious seizures is often difficult even for the most experienced clinicians. Therefore, having a low threshold for clinical suspicion is essential in the timely diagnosis of medical child abuse. This article provides a review of the epidemiology, diagnosis, and management of medical child abuse when it involves seizures.

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.

Essential components of an effective transition from paediatric to adult neurologist care for adolescents with Duchenne muscular dystrophy; a consensus derived using the Delphi methodology in Eastern Europe, Greece and Israel.

PURPOSE: An increasing number of patients with Duchenne muscular dystrophy (DMD) now have access to improved standard of care and disease modifying treatments, which improve the clinical course of DMD and extend life expectancy beyond 30 years of age. A key issue for adolescent DMD patients is the transition from paediatric- to adult-oriented healthcare. Adolescents and adults with DMD have unique but highly complex healthcare needs associated with long-term steroid use, orthopaedic, respiratory, cardiac, psychological, and gastrointestinal problems meaning that a comprehensive transition process is required. A sub-optimal transition into adult care can have disruptive and deleterious consequences for a patient's long-term care. This paper details the results of a consensus amongst clinicians on transitioning adolescent DMD patients from paediatric to adult neurologists that can act as a guide to best practice to ensure patients have continuous comprehensive care at every stage of their journey. METHODS: The consensus was derived using the Delphi methodology. Fifty-three statements were developed by a Steering Group (the authors of this paper) covering seven topics: Define the goals of transition, Preparing the patient, carers/parents and the adult centre, The transition process at the paediatric centre, The multidisciplinary transition summary - Principles, The multidisciplinary transition summary - Content, First visit in the adult centre, Evaluation of transition. The statements were shared with paediatric and adult neurologists across Central Eastern Europe (CEE) as a survey requesting their level of agreement with each statement. RESULTS: Data from 60 responders (54 full responses and six partial responses) were included in the data set analysis. A consensus was agreed across 100% of the statements. CONCLUSIONS: It is hoped that the findings of this survey which sets out agreed best practice statements, and the transfer template documents developed, will be widely used and so facilitate an effective transition from paediatric to adult care for adolescents with DMD.

[Chat messenger use in the care of patients with Parkinson's disease]. / Chat-Messenger-Nutzung in der Parkinson-Versorgung.

BACKGROUND: The demand for chat messaging apps for communication between physicians, therapists and patients is increasing. The expectations for this form of communication and uncertainties regarding introduction and use are heterogeneous. OBJECTIVE: The implementation of chat messengers in the care of patients with Parkinson's disease should be facilitated by recommendations regarding introduction and usage. METHODS: Semi-structured interviews with neurologists and physiotherapists were conducted to capture the expectations and needs regarding the use of chat messengers. From the data analysis, recommendations were derived. RESULTS: The expectations for technical functionality exceeded the chat messenger functions. This concerns, e.g., the connection of the chat messenger to the electronic patient file. There is a great deal of uncertainty, particularly when it comes to the applicable General Data Protection Regulations (GDPR). The recommendations relating to the use of chat messengers, data protection aspects, the design of such tools and methodological considerations can help to implement the tool as an additional communication channel. CONCLUSION: Practical recommendations regarding functionality, the use of chat messengers in everyday life and in relation to data protection are derived from the results. By improving knowledge, physicians and therapists can contribute to the successful establishment of chat messengers as an additional communication tool.

Global impact of a virtual neurology morning report.

The global shortage and inequitable distribution of neurologists has led to significant gaps not only in neurology care, but also in neurology education. In order to increase access to neurology education, we developed neurology virtual morning report (NVMR), a virtual, open-access, case-based clinical reasoning conference available to learners worldwide. To evaluate NVMR's impact on participants' perception of, interest in, and confidence in neurology, we conducted a survey. Respondents represented 25 different countries of various income levels. The majority of respondents reported that NVMR decreased their perception of difficulty in understanding neurology and increased confidence in various clinical reasoning domains in neurology. Additionally, the majority of medical student participants showed an increased interest in pursuing neurology as a future specialty after participating in NVMR. NVMR represents a potential model for virtual educational conferences and highlights the opportunities digital education has to improve equitable access to neurology education.

The emotional burden of caring for patients with Lennox-Gastaut syndrome, Dravet syndrome, and tuberous sclerosis complex-associated epilepsy: A qualitative study in Japan.

INTRODUCTION: Lennox-Gastaut syndrome (LGS) and Dravet syndrome (DS) are rare, childhood-onset conditions associated with severe, treatment-resistant epilepsy and developmental issues, including motor and cognitive impairment. Tuberous sclerosis complex (TSC) is a rare genetic disease commonly associated with epilepsy and other neuropsychiatric disorders. This cross-sectional, interview-based study examined the qualitative impact of caring for patients with LGS, DS, and TSC-associated epilepsy on caregivers in Japan, from the perspective of both caregivers and physicians. METHODS: The survey included a pre-interview worksheet to describe caregivers' emotional journeys, followed by a ≤ 60-minute one-on-one interview. Eligible participants were Japanese caregivers of patients with LGS, DS, or TSC treated for epilepsy symptoms, and Japan-residing pediatricians or neurologists treating ≥ 3 patients with LGS, DS, and/or TSC. Interview question responses were subjected to content analysis to identify the most common response tendencies and themes. RESULTS: Twenty-six caregivers responded (mean [standard deviation (SD)] age, 45.9 [9.5] years; age range 29-68; 92 % female), caring for patients with LGS (n = 5), DS (n = 10), and TSC (n = 11); patient mean (SD) age, 13.6 (10.0) years; age range 2-44; 27 % adults; 50 % female. Nineteen physicians, treating patients with LGS (n = 9), DS (n = 7), and TSC (n = 10), participated. Caregivers and physicians generally aligned on the factors affecting caregivers' emotional states / quality of life (QoL). The most frequently reported caregiver emotions at the time of diagnosis were shock and discouragement, anxiety for the future, and relief at receiving a diagnosis. Negative emotions throughout disease progression up until the time of survey were mainly caused by worsening of seizures, burden of constant caregiving / lack of free time, and patient's developmental issues. Positive emotions were linked to effective treatment / reduced seizures; more free time owing to the use of facilities, services, or other caregiving support; and developmental progress. Physicians acknowledged that caregivers required consultation services to support their emotional needs. In terms of unmet needs, caregiver and physician responses were aligned on the insufficient availability of services/facilities, the lack of effective treatments, and the uncertainties of adult patient care. CONCLUSIONS: Caregivers of patients with LGS, DS, or TSC-associated epilepsy in Japan reported a high degree of emotional burden related to frequent seizures, developmental issues, and constant caregiving. The burden of suboptimal treatment effectiveness, limited access to support services, and uncertainties in long-term care emphasize important unmet treatment needs.