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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: Health care delivery systems transformed rapidly at the beginning of the coronavirus disease 2019 (COVID-19) pandemic to slow the spread of the virus while identifying novel methods for providing care. In many ways, the pandemic affected both persons with neurologic illness and neurologists. This study describes the perspectives and experiences of community neurologists providing care for patients with neurodegenerative illnesses during the COVID-19 pandemic. METHODS: We conducted a qualitative study with 20 community neurologists from a multisite comparative-effectiveness trial of outpatient palliative care from July 23, 2020, to November 11, 2020. Participants were interviewed individually about the impact of the coronavirus disease 2019 (COVID-19) pandemic on their professional and personal lives. Interviews were analyzed with matrix analysis to identify key themes. RESULTS: Four main themes illustrated the impact of the pandemic on community neurologists: (1) challenges of the current political climate, (2) lack of support for new models of care, (3) being on the frontline of suffering, and (4) clinician self-care. Taken together, the themes capture the unusual environment in which community neurologists practice, the lack of clinician trust among some patients, patient and professional isolation, and opportunities to support quality care delivery. CONCLUSIONS: The COVID-19 pandemic and pandemic politics created an environment that made care provision challenging for community neurologists. Efforts to improve care delivery should proactively work to reduce clinician burnout while incorporating support for new models of care adopted due to the pandemic. TRIAL REGISTRATION INFORMATION: ClinicalTrials.gov identifier: NCT03076671.

BackgroundSmartphone technology is ubiquitous throughout neurologic practices, and numerous apps relevant to a neurologist's clinical practice are now available. Data from other medical specialties suggest high utilization of smartphones in routine clinical care. However, the ways in which these devices are used by neurologists for patient care-related activities are not well defined.ObjectiveThis paper aims to characterize current patterns of smartphone use and perceptions of the utility of smartphones for patient care-related activities among academic neurology trainees and attending physicians. We also seek to characterize areas of need for future app development.MethodsWe developed a 31-item electronic questionnaire to address these questions and invited neurology trainees and attendings of all residency programs based in the United States to participate. We summarized descriptive statistics for respondents and specifically compared responses between trainees and attending physicians.ResultsWe received 213 responses, including 112 trainee and 87 attending neurologist responses. Neurology trainees reported more frequent use of their smartphone for patient care-related activities than attending neurologists (several times per day: 84/112, 75.0% of trainees; 52/87, 59.8% of attendings; P=.03). The most frequently reported activities were internet use, calendar use, communication with other physicians, personal education, and health care-specific app use. Both groups also reported regular smartphone use for the physical examination, with trainees again reporting more frequent usage compared with attendings (more than once per week: 35/96, 36.5% of trainees; 8/58, 13.8% of attendings; P=.03). Respondents used their devices most commonly for the vision, cranial nerve, and language portions of the neurologic examination. The majority of respondents in both groups reported their smartphones as "very useful" or "essential" for the completion of patient care-related activities (81/108, 75.0% of trainees; 50/83, 60.2% of attendings; P=.12). Neurology trainees reported a greater likelihood of using their smartphones in the future than attending neurologists ("very likely": 73/102, 71.6% of trainees; 40/82, 48.8% of attendings; P=.005). The groups differed in their frequencies of device usage for specific patient care-related activities, with trainees reporting higher usage for most activities. Despite high levels of use, only 12 of 184 (6.5%) respondents reported ever having had any training on how to use their device for clinical care. Regarding future app development, respondents rated vision, language, mental status, and cranial nerve testing as potentially being the most useful to aid in the performance of the neurologic examination.ConclusionsSmartphones are used frequently and are subjectively perceived to be highly useful by academic neurologists. Trainees tended to use their devices more frequently than attendings. Our results suggest specific avenues for future technological development to improve smartphone use for patient care-related activities. They also suggest an unmet need for education on effectively using smartphone technology for clinical care.

Background and Purpose- The National Institutes of Health (NIH) StrokeNet provides a nationwide infrastructure to advance stroke research. Capitalizing on this unique opportunity, the NIH StrokeNet Training Core (NSTC) was established with the overarching goal of enhancing the professional development of a diverse spectrum of professionals who are embedded in the stroke clinical trials network of the NIH StrokeNet. Methods- This special report provides a descriptive account of the rationale, organization, and activities of the NSTC since its inception in 2013. Current processes and their evolution over time for facilitating training of NIH StrokeNet trainees have been highlighted. Data collected for monitoring training are summarized. Outcomes data (publications and grants) collected by NSTC was supplemented by publicly available resources. Results- The NSTC comprises of cross-network faculty, trainees, and education coordinators. It helps in the development and monitoring of training programs and organizes educational and career development activities. Trainees are provided directed guidance towards their mandated research projects, including opportunities to present at the International Stroke Conference. The committee has focused on developing sustainable models of peer-to-peer interaction and cross-institutional mentorships. A total of 124 professionals (43.7% female, 10.5% underrepresented minorities) have completed training between 2013 and 2018, of whom 55% were clinical vascular neurologists. Of the total, 85% transitioned to a formal academic position and 95% were involved in stroke research post-training. Altogether, 1659 indexed publications have been authored or co-authored by NIH StrokeNet Trainees, of which 58% were published during or after their training years. Based on data from 109 trainees, 33% had submitted 72 grant proposals as principal or co-principal investigators of which 22.2% proposals have been funded. Conclusions- NSTC has provided a foundation to foster nationwide training in stroke research. Our data demonstrate strong contribution of trainees towards academic scholarship. Continued innovation in educational methodologies is required to adapt to unique training opportunities such as the NIH StrokeNet.

BackgroundSmartphone technology is ubiquitous throughout neurologic practices, and numerous apps relevant to a neurologist's clinical practice are now available. Data from other medical specialties suggest high utilization of smartphones in routine clinical care. However, the ways in which these devices are used by neurologists for patient care-related activities are not well defined.ObjectiveThis paper aims to characterize current patterns of smartphone use and perceptions of the utility of smartphones for patient care-related activities among academic neurology trainees and attending physicians. We also seek to characterize areas of need for future app development.MethodsWe developed a 31-item electronic questionnaire to address these questions and invited neurology trainees and attendings of all residency programs based in the United States to participate. We summarized descriptive statistics for respondents and specifically compared responses between trainees and attending physicians.ResultsWe received 213 responses, including 112 trainee and 87 attending neurologist responses. Neurology trainees reported more frequent use of their smartphone for patient care-related activities than attending neurologists (several times per day: 84/112, 75.0% of trainees; 52/87, 59.8% of attendings; P=.03). The most frequently reported activities were internet use, calendar use, communication with other physicians, personal education, and health care-specific app use. Both groups also reported regular smartphone use for the physical examination, with trainees again reporting more frequent usage compared with attendings (more than once per week: 35/96, 36.5% of trainees; 8/58, 13.8% of attendings; P=.03). Respondents used their devices most commonly for the vision, cranial nerve, and language portions of the neurologic examination. The majority of respondents in both groups reported their smartphones as "very useful" or "essential" for the completion of patient care-related activities (81/108, 75.0% of trainees; 50/83, 60.2% of attendings; P=.12). Neurology trainees reported a greater likelihood of using their smartphones in the future than attending neurologists ("very likely": 73/102, 71.6% of trainees; 40/82, 48.8% of attendings; P=.005). The groups differed in their frequencies of device usage for specific patient care-related activities, with trainees reporting higher usage for most activities. Despite high levels of use, only 12 of 184 (6.5%) respondents reported ever having had any training on how to use their device for clinical care. Regarding future app development, respondents rated vision, language, mental status, and cranial nerve testing as potentially being the most useful to aid in the performance of the neurologic examination.ConclusionsSmartphones are used frequently and are subjectively perceived to be highly useful by academic neurologists. Trainees tended to use their devices more frequently than attendings. Our results suggest specific avenues for future technological development to improve smartphone use for patient care-related activities. They also suggest an unmet need for education on effectively using smartphone technology for clinical care.

In the presence of a patent foramen ovale (PFO), a transient ischemic attack is indistinguishable from a complex migraine. Both have transient neurologic deficits with a normal MRI. The size of a PFO by echo should not be a criterion for closure. A stroke or peripheral embolus associated with a PFO is the indication for closure. Informed consent for PFO closure should include the warning that about 1 in 500 cases require device removal through open-heart surgery.

Until recently, evidence to support Patent Foramen Ovale (PFO) closure for secondary prevention of recurrent stroke has been controversial. Publication of high-quality evidence from randomized clinical trials and the subsequent FDA approval of two devices for percutaneous PFO closure is expected to increase the volume of PFO closure procedures not only in the United States but worldwide. As this technology is disseminated broadly to the public, ensuring the safe and efficacious performance of PFO closure is essential to mitigate risk and avoid unnecessary procedures. This document, prepared by a multi-disciplinary writing group convened by the Society for Cardiovascular Angiography and Interventions and including representatives from the American Academy of Neurology, makes recommendations for institutional infrastructure and individual skills necessary to initiate and maintain an active PFO/stroke program, with emphasis on shared decision making and patient-centered care.

IntroductionPolyneuropathy signs (Neuropathy Impairment Score, NIS), neurophysiologic tests (m+7Ionis ), disability, and health scores were assessed in baseline evaluations of 100 patients entered into an oligonucleotide familial amyloidotic polyneuropathy (FAP) trial.MethodsWe assessed: (1) Proficiency of grading neurologic signs and correlation with neurophysiologic tests, and (2) clinometric performance of modified NIS+7 neurophysiologic tests (mNIS+7Ionis ) and its subscores and correlation with disability and health scores.ResultsThe mNIS+7Ionis sensitively detected, characterized, and broadly scaled diverse polyneuropathy impairments. Polyneuropathy signs (NIS and subscores) correlated with neurophysiology tests, disability, and health scores. Smart Somatotopic Quantitative Sensation Testing of heat as pain 5 provided a needed measure of small fiber involvement not adequately assessed by other tests.ConclusionsSpecially trained neurologists accurately assessed neuropathy signs as compared to referenced neurophysiologic tests. The score, mNIS+7Ionis , broadly detected, characterized, and scaled polyneuropathy abnormality in FAP, which correlated with disability and health scores. Muscle Nerve 56: 901-911, 2017.

Neonatal encephalopathy due to intrapartum events is estimated at 1 to 2 per 1000 live births in high-income countries. Outcomes have improved over the past decade due to implementation of therapeutic hypothermia, the only clinically available neuroprotective strategy for hypoxic-ischemic encephalopathy. Neonatal encephalopathy is the most common condition treated within a neonatal neurocritical care unit. Neonates with encephalopathy benefit from a neurocritical care approach due to prevention of secondary brain injury through attention to basic physiology, earlier recognition and treatment of neurologic complications, consistent management using guidelines and protocols, and use of optimized teams at dedicated referral centers.

Neonatal encephalopathy due to intrapartum events is estimated at 1 to 2 per 1000 live births in high-income countries. Outcomes have improved over the past decade due to implementation of therapeutic hypothermia, the only clinically available neuroprotective strategy for hypoxic-ischemic encephalopathy. Neonatal encephalopathy is the most common condition treated within a neonatal neurocritical care unit. Neonates with encephalopathy benefit from a neurocritical care approach due to prevention of secondary brain injury through attention to basic physiology, earlier recognition and treatment of neurologic complications, consistent management using guidelines and protocols, and use of optimized teams at dedicated referral centers.

ObjectivesIn this 2-center study, we assessed the technical feasibility and reliability of a low cost, tablet-based mobile telestroke option for ambulance transport and hypothesized that the NIH Stroke Scale (NIHSS) could be performed with similar reliability between remote and bedside examinations.MethodsWe piloted our mobile telemedicine system in 2 geographic regions, central Virginia and the San Francisco Bay Area, utilizing commercial cellular networks for videoconferencing transmission. Standardized patients portrayed scripted stroke scenarios during ambulance transport and were evaluated by independent raters comparing bedside to remote mobile telestroke assessments. We used a mixed-effects regression model to determine intraclass correlation of the NIHSS between bedside and remote examinations (95% confidence interval).ResultsWe conducted 27 ambulance runs at both sites and successfully completed the NIHSS for all prehospital assessments without prohibitive technical interruption. The mean difference between bedside (face-to-face) and remote (video) NIHSS scores was 0.25 (1.00 to -0.50). Overall, correlation of the NIHSS between bedside and mobile telestroke assessments was 0.96 (0.92-0.98). In the mixed-effects regression model, there were no statistically significant differences accounting for method of evaluation or differences between sites.ConclusionsUtilizing a low-cost, tablet-based platform and commercial cellular networks, we can reliably perform prehospital neurologic assessments in both rural and urban settings. Further research is needed to establish the reliability and validity of prehospital mobile telestroke assessment in live patients presenting with acute neurologic symptoms.