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1.
Neurology ; 102(4): e208087, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38306606

ABSTRACT

The National Association of Epilepsy Centers first published the guidelines for epilepsy centers in 1990, which were last updated in 2010. Since that update, epilepsy care and the science of guideline development have advanced significantly, including the importance of incorporating a diversity of stakeholder perspectives such as those of patients and their caregivers. Currently, despite extensive published data examining the efficacy of treatments and diagnostic testing for epilepsy, there remain significant gaps in data identifying the essential services needed for a comprehensive epilepsy center and the optimal manner for their delivery. The trustworthy consensus-based statements (TCBS) process produces unbiased, scientifically valid guidelines through a transparent process that incorporates available evidence and expert opinion. A systematic literature search returned 5937 relevant studies from which 197 articles were retained for data extraction. A panel of 41 stakeholders with diverse expertise evaluated this evidence and drafted recommendations following the TCBS process. The panel reached consensus on 52 recommendations covering services provided by specialized epilepsy centers in both the inpatient and outpatient settings in major topic areas including epilepsy monitoring unit care, surgery, neuroimaging, neuropsychology, genetics, and outpatient care. Recommendations were informed by the evidence review and reflect the consensus of a broad panel of expert opinions.


Subject(s)
Epilepsy , Humans , Epilepsy/diagnosis , Epilepsy/therapy , Consensus , Neuroimaging
2.
Epilepsy Behav ; 150: 109571, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38070408

ABSTRACT

OBJECTIVE: An epilepsy monitoring unit (EMU) is a specialized unit designed for capturing and characterizing seizures and other paroxysmal events with continuous video electroencephalography (vEEG). Nearly 260 epilepsy centers in the United States are accredited by the National Association of Epilepsy Centers (NAEC) based on adherence to specific clinical standards to improve epilepsy care, safety, and quality. This study examines EMU staffing, safety practices, and reported outcomes. METHOD: We analyzed NAEC annual report data and results from a supplemental survey specific to EMU practices reported in 2019 from 341 pediatric or adult center directors. Data on staffing, resources, safety practices and complications were collated with epilepsy center characteristics. We summarized using frequency (percentage) for categorical variables and median (inter-quartile range) for continuous variables. We used chi-square or Fisher's exact tests to compare staff responsibilities. RESULTS: The supplemental survey response rate was 100%. Spell classification (39%) and phase 1 testing (28%) were the most common goals of the 91,069 reported admissions. The goal ratio of EEG technologist to beds of 1:4 was the most common during the day (68%) and off-hours (43%). Compared to residents and fellows, advanced practice providers served more roles in the EMU at level 3 or pediatric-only centers. Status epilepticus (SE) was the most common reported complication (1.6% of admissions), while cardiac arrest occurred in 0.1% of admissions. SIGNIFICANCE: EMU staffing and safety practices vary across US epilepsy centers. Reported complications in EMUs are rare but could be further reduced, such as with more effective treatment or prevention of SE. These findings have potential implications for improving EMU safety and quality care.


Subject(s)
Epilepsy , Status Epilepticus , Adult , Child , Humans , Electroencephalography/methods , Epilepsy/epidemiology , Epilepsy/drug therapy , Monitoring, Physiologic/methods , Retrospective Studies , Seizures/diagnosis , Seizures/epidemiology , Seizures/drug therapy , Surveys and Questionnaires
3.
Neurol Clin Pract ; 14(1): e200231, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38152065

ABSTRACT

Background and Objectives: The American Academy of Neurology has developed quality measures related to various neurologic disorders. A gap exists in the implementation of these measures in the different health care systems. To date, there has been no electronic health care record nor implementation of quality measures in Antigua. Therefore, we aimed to increase the percent of patients who have epilepsy quality measures documented using standardized common data elements in the outpatient neurology clinic at Sir Lester Bird Medical Center from 0% to 80% per week by June 1, 2022 and sustain for 6 months. Methods: We used the Institute for Health care Improvement Model for Improvement methodology. A data use agreement was implemented. Data were displayed using statistical process control charts and the American Society for Quality criteria to determine statistical significance and centerline shifts. Results: Current and future state process maps were developed to determine areas of opportunity for interventions. Interventions were developed following a "Plan-Do-Study-Act cycle." One intervention was the creation of a RedCap survey and database to be used by health care providers during clinical patient encounters. Because of multiple interventions, we achieved a 100% utilization of the survey for clinical care. Discussion: Quality improvement (QI) methodology can be used for implementation of quality measures in various settings to improve patient care outcomes without use of significant resources. Implementation of quality measures can increase efficiency in clinical delivery. Similar QI methodology could be implemented in other resource-limited countries of the Caribbean and globally.

4.
Harmful Algae ; 129: 102496, 2023 11.
Article in English | MEDLINE | ID: mdl-37951606

ABSTRACT

The diatom Pseudo-nitzschia H. Peragallo is perhaps the most intensively researched genus of marine pennate diatoms, with respect to species diversity, life history strategies, toxigenicity, and biogeographical distribution. The global magnitude and consequences of harmful algal blooms (HABs) of Pseudo-nitzschia are particularly significant because of the high socioeconomic impacts and environmental and human health risks associated with the production of the neurotoxin domoic acid (DA) among populations of many (although not all) species. This has led to enhanced monitoring and mitigation strategies for toxigenic Pseudo-nitzschia blooms and their toxins in recent years. Nevertheless, human adaptive actions based on future scenarios of bloom dynamics and proposed shifts in biogeographical distribution under climate-change regimes have not been implemented on a regional scale. In the CoCliME (Co-development of climate services for adaptation to changing marine ecosystems) program these issues were addressed with respect to past, current and anticipated future status of key HAB genera such as Pseudo-nitzschia and expected benefits of enhanced monitoring. Data on the distribution and frequency of Pseudo-nitzschia blooms in relation to DA occurrence and associated amnesic shellfish toxin (AST) events were evaluated in a contemporary and historical context over the past several decades from key northern CoCliME Case Study areas. The regional studies comprised the greater North Sea and adjacent Kattegat-Skagerrak and Norwegian Sea, eastern North Atlantic marginal seas and Arctic gateways, and the Baltic Sea. The first evidence of possible biogeographical expansion of Pseudo-nitzschia taxa into frontier eastern Arctic gateways was provided from DNA barcoding signatures. Key climate change indicators, such as salinity, temperature, and water-column stratification were identified as drivers of upwelling and advection related to the distribution of regional Pseudo-nitzschia blooms. The possible influence of changing variables on bloom dynamics, magnitude, frequency and spatial and temporal distribution were interpreted in the context of regional ocean climate models. These climate change indicators may play key roles in selecting for the occurrence and diversity of Pseudo-nitzschia species within the broader microeukaryote communities. Shifts to higher temperature and lower salinity regimes predicted for the southern North Sea indicate the potential for high-magnitude Pseudo-nitzschia blooms, currently absent from this area. Ecological and socioeconomic impacts of Pseudo-nitzschia blooms are evaluated with reference to effects on fisheries and mariculture resources and coastal ecosystem function. Where feasible, effective adaptation strategies are proposed herein as emerging climate services for the northern CoCLiME region.


Subject(s)
Diatoms , Humans , Ecosystem , Oceans and Seas , Harmful Algal Bloom , Socioeconomic Factors
5.
J Neurosurg Pediatr ; 32(6): 739-749, 2023 10 01.
Article in English | MEDLINE | ID: mdl-37856414

ABSTRACT

OBJECTIVE: MR-guided laser interstitial thermal therapy (MRgLITT) is associated with lower seizure-free outcome but better safety profile compared to open surgery. However, the predictors of seizure freedom following MRgLITT remain uncertain. This study aimed to use machine learning to predict seizure-free outcome following MRgLITT and to identify important predictors of seizure freedom in children with drug-resistant epilepsy. METHODS: This multicenter study included children treated with MRgLITT for drug-resistant epilepsy at 13 epilepsy centers. The authors used clinical data, diagnostic investigations, and ablation features to predict seizure-free outcome at 1 year post-MRgLITT. Patients from 12 centers formed the training cohort, and patients in the remaining center formed the testing cohort. Five machine learning algorithms were developed on the training data by using 10-fold cross-validation, and model performance was measured on the testing cohort. The models were developed and tested on the complete feature set. Subsequently, 3 feature selection methods were used to identify important predictors. The authors then assessed performance of the parsimonious models based on these important variables. RESULTS: This study included 268 patients who underwent MRgLITT, of whom 44.4% had achieved seizure freedom at 1 year post-MRgLITT. A gradient-boosting machine algorithm using the complete feature set yielded the highest area under the curve (AUC) on the testing set (AUC 0.67 [95% CI 0.50-0.82], sensitivity 0.71 [95% CI 0.47-0.88], and specificity 0.66 [95% CI 0.50-0.81]). Logistic regression, random forest, support vector machine, and neural network yielded lower AUCs (0.58-0.63) compared to the gradient-boosting machine but the findings were not statistically significant (all p > 0.05). The 3 feature selection methods identified video-EEG concordance, lesion size, preoperative seizure frequency, and number of antiseizure medications as good prognostic features for predicting seizure freedom. The parsimonious models based on important features identified by univariate feature selection slightly improved model performance compared to the complete feature set. CONCLUSIONS: Understanding the predictors of seizure freedom after MRgLITT will assist with prognostication.


Subject(s)
Drug Resistant Epilepsy , Epilepsy , Laser Therapy , Humans , Child , Treatment Outcome , Laser Therapy/methods , Seizures/surgery , Drug Resistant Epilepsy/surgery , Epilepsy/surgery , Magnetic Resonance Imaging/methods , Lasers , Retrospective Studies
6.
Article in English | MEDLINE | ID: mdl-37818647

ABSTRACT

INTRODUCTION: Digital measures and digital health-care delivery have been rarely implemented in lower-and-middle-income countries (LMICs), contributing to worsening global disparities and inequities. Sustainable ways to implement and use digital approaches will help to improve time to access, management, and quality of life in persons with epilepsy, goals that remain unreachable in under-resourced communities. As under-resourced environments differ in human and economic resources, no one approach will be appropriate to all LMICs. AREAS COVERED: Digital health and tools to monitor and measure digital endpoints and metrics of quality of life will need to be developed or adapted to the specific needs of under-resourced areas. Portable technologies may partially address the urban-rural divide. Careful delineation of stakeholders and their engagement and alignment in all efforts is critically important if these initiatives are to be successfully sustained. Privacy issues, neglected in many regions globally, must be purposefully addressed. EXPERT OPINION: Epilepsy care in under-resourced environments has been limited by the lack of relevant technologies for diagnosis and treatment. Digital biomarkers, and investigative technological advances, may finally make it feasible to sustainably improve care delivery and ultimately quality of life including personalized epilepsy care.

7.
Front Neurosci ; 17: 1151885, 2023.
Article in English | MEDLINE | ID: mdl-37332870

ABSTRACT

Introduction: The single equivalent current dipole (sECD) is the standard clinical procedure for presurgical language mapping in epilepsy using magnetoencephalography (MEG). However, the sECD approach has not been widely used in clinical assessments, mainly because it requires subjective judgements in selecting several critical parameters. To address this limitation, we developed an automatic sECD algorithm (AsECDa) for language mapping. Methods: The localization accuracy of the AsECDa was evaluated using synthetic MEG data. Subsequently, the reliability and efficiency of AsECDa were compared to three other common source localization methods using MEG data recorded during two sessions of a receptive language task in 21 epilepsy patients. These methods include minimum norm estimation (MNE), dynamic statistical parametric mapping (dSPM), and dynamic imaging of coherent sources (DICS) beamformer. Results: For the synthetic single dipole MEG data with a typical signal-to-noise ratio, the average localization error of AsECDa was less than 2 mm for simulated superficial and deep dipoles. For the patient data, AsECDa showed better test-retest reliability (TRR) of the language laterality index (LI) than MNE, dSPM, and DICS beamformer. Specifically, the LI calculated with AsECDa revealed excellent TRR between the two MEG sessions across all patients (Cor = 0.80), while the LI for MNE, dSPM, DICS-event-related desynchronization (ERD) in the alpha band, and DICS-ERD in the low beta band ranged lower (Cor = 0.71, 0.64, 0.54, and 0.48, respectively). Furthermore, AsECDa identified 38% of patients with atypical language lateralization (i.e., right lateralization or bilateral), compared to 73%, 68%, 55%, and 50% identified by DICS-ERD in the low beta band, DICS-ERD in the alpha band, MNE, and dSPM, respectively. Compared to other methods, AsECDa's results were more consistent with previous studies that reported atypical language lateralization in 20-30% of epilepsy patients. Discussion: Our study suggests that AsECDa is a promising approach for presurgical language mapping, and its fully automated nature makes it easy to implement and reliable for clinical evaluations.

8.
Epilepsy Behav Rep ; 21: 100592, 2023.
Article in English | MEDLINE | ID: mdl-36875916

ABSTRACT

Purpose: In February 2021 a series of winter storms caused power outages for nearly 10 million people in the United States, Northern Mexico and Canada. In Texas, the storms caused the worst energy infrastructure failure in state history, leading to shortages of water, food and heat for nearly a week. Impacts on health and well-being from natural disasters are greater in vulnerable populations such as individuals with chronic illnesses, for example due to supply chain disruptions. We aimed to determine the impact of the winter storm on our patient population of children with epilepsy (CWE). Methods: We conducted a survey of families with CWE that are being followed at Dell Children's Medical Center in Austin, Texas. Results: Of the 101 families who completed the survey, 62% were negatively affected by the storm. Twenty-five percent had to refill antiseizure medications during the week of disruptions, and of those needing refills, 68% had difficulties obtaining the medications, leading to nine patients-or 36% of those needing a refill-running out of medications and two emergency room visits because of seizures and lack of medications. Conclusions: Our results demonstrate that close to 10% of all patients included in the survey completely ran out of antiseizure medications, and many more were affected by lack of water, heat, power and food. This infrastructure failure emphasizes the need for adequate disaster preparation for vulnerable populations such as children with epilepsy for the future.

9.
Epilepsy Behav ; 142: 109171, 2023 05.
Article in English | MEDLINE | ID: mdl-36989568

ABSTRACT

INTRODUCTION: While several demographic and epilepsy-specific characteristics are associated with diminished HRQoL in children and adolescents with epilepsy, prior investigations have failed to incorporate and address the influence of broader social contextual factors on functional outcomes. To address this gap, the purpose of the current study was to investigate the role of neighborhood disadvantage on HRQoL, including the extent to which familial and seizure-specific risk factors are impacted. METHODS: Data included parental ratings on the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire for 135 children and adolescents with epilepsy, and the Area Deprivation Index (ADI) to measure neighborhood disadvantage. Bivariate correlations were conducted to identify significant associations with neighborhood disadvantage, followed by a three-stage hierarchical multiple regression to predict HRQoL. Follow-up binary logistic regressions were used to determine the risk conferred by neighborhood disadvantage on sociodemographic, seizure-specific, and HRQoL factors. RESULTS: Moderate associations between neighborhood disadvantage and familial factors, including parental psychiatric history and Medicaid insurance, were identified, while disadvantage and greater seizure frequency were marginally associated. Neighborhood disadvantage independently predicted HRQoL, and was the sole significant predictor of HRQoL when familial factors were incorporated. Children with epilepsy living in disadvantaged areas were four times more likely to have diminished HRQoL, five times more likely to live with a parent with a significant psychiatric history, and four times more likely to reside with a family receiving Medicaid insurance. CONCLUSIONS: These results highlight the importance of identifying high-risk groups, as the cumulative burden of social context, familial factors, and seizure-specific characteristics contribute to lower HRQoL in pediatric epilepsy which disproportionately affects patients from lower-resourced backgrounds. Potentially modifiable factors such as parental psychiatric status exist within the child's environment, emphasizing the importance of a whole-child approach to patient care. Further exploration of disadvantage in this population is needed to better understand these relationships over time.


Subject(s)
Epilepsy , Quality of Life , Adolescent , Child , Humans , Quality of Life/psychology , Epilepsy/epidemiology , Epilepsy/psychology , Parents/psychology , Seizures , Neighborhood Characteristics
10.
Epilepsia ; 64(4): 821-830, 2023 04.
Article in English | MEDLINE | ID: mdl-36654194

ABSTRACT

OBJECTIVE: The evaluation to determine candidacy and treatment for epilepsy surgery in persons with drug-resistant epilepsy (DRE) is not uniform. Many non-invasive and invasive tests are available to ascertain an appropriate treatment strategy. This study examines expert response to clinical vignettes of magnetic resonance imaging (MRI)-positive lesional focal cortical dysplasia in both temporal and extratemporal epilepsy to identify associations in evaluations and treatment choice. METHODS: We analyzed annual report data and a supplemental epilepsy practice survey reported in 2020 from 206 adult and 136 pediatric epilepsy center directors in the United States. Non-invasive and invasive testing and surgical treatment strategies were compiled for the two scenarios. We used chi-square tests to compare testing utilization between the two scenarios. Multivariable logistic regression modeling was performed to assess associations between variables. RESULTS: The supplemental survey response rate was 100% with 342 responses included in the analyses. Differing testing and treatment approaches were noted between the temporal and extratemporal scenarios such as chronic invasive monitoring selected in 60% of the temporal scenario versus 93% of the extratemporal scenario. Open resection was the most common treatment choice; however, overall treatment choices varied significantly (p < .001). Associations between non-invasive testing, invasive testing, and treatment choices were present in both scenarios. For example, in the temporal scenario stereo-electroencephalography (SEEG) was more commonly associated with fluorodeoxyglucose-positron emission tomography (FDG-PET) (odds ratio [OR] 1.85; 95% confidence interval [CI] 1.06-3.29; p = .033), magnetoencephalography (MEG) (OR 2.90; 95% CI 1.60-5.28; p = <.001), high density (HD) EEG (OR 2.80; 95% CI 1.27-6.24; p = .011), functional MRI (fMRI) (OR 2.17; 95% CI 1.19-4.10; p = .014), and Wada (OR 2.16; 95% CI 1.28-3.66; p = .004). In the extratemporal scenario, choosing SEEG was associated with increased odds of neuromodulation over open resection (OR 3.13; 95% CI 1.24-7.89; p = .016). SIGNIFICANCE: In clinical vignettes of temporal and extratemporal lesional DRE, epilepsy center directors displayed varying patterns of non-invasive testing, invasive testing, and treatment choices. Differences in practice underscore the need for comparative trials for the surgical management of DRE.


Subject(s)
Drug Resistant Epilepsy , Epilepsies, Partial , Epilepsy , Adult , Child , Humans , Censuses , Seizures , Epilepsies, Partial/diagnostic imaging , Epilepsies, Partial/surgery , Drug Resistant Epilepsy/diagnostic imaging , Drug Resistant Epilepsy/surgery , Electroencephalography/methods , Magnetic Resonance Imaging , Treatment Outcome , Retrospective Studies
11.
Neurosurgery ; 92(2): 398-406, 2023 02 01.
Article in English | MEDLINE | ID: mdl-36637274

ABSTRACT

BACKGROUND: Surgery has become integral in treating children with tuberous sclerosis complex (TSC)-related drug-resistant epilepsy (DRE). OBJECTIVE: To describe outcomes of a multimodal diagnostic and therapeutic approach comprising invasive intracranial monitoring and surgical treatment and compare the complementary techniques of open resection and magnetic resonance-guided laser interstitial thermal therapy. METHODS: Clinical and radiographic data were prospectively collected for pediatric patients undergoing surgical evaluation for TSC-related DRE at our tertiary academic hospital. Seizure freedom, developmental improvement, and Engel class were compared. RESULTS: Thirty-eight patients (20 females) underwent treatment in January 2016 to April 2019. Thirty-five underwent phase II invasive monitoring with intracranial electrodes: 24 stereoencephalography, 9 craniotomy for grid/electrode placement, and 2 grids + stereoencephalography. With the multimodal approach, 33/38 patients (87%) achieved >50% seizure freedom of the targeted seizure type after initial treatment; 6/9 requiring secondary treatment and 2/2 requiring a third treatment achieved >50% freedom. The median Engel class was II at last follow-up (1.65 years), and 55% of patients were Engel class I/II. The mean age was lower for children undergoing open resection (2.4 vs 4.9 years, P = .04). Rates of >50% reduction in seizures (86% open resection vs 88% laser interstitial thermal therapy) and developmental improvement (86% open resection vs 83% magnetic resonance-guided laser interstitial thermal therapy) were similar. CONCLUSION: This hybrid approach of using both open surgical and minimally invasive techniques is safe and effective in treating DRE secondary to TSC. Clinical trials focused on treatment method with longer follow-up are needed to determine the optimal candidates for each approach and compare the treatment modalities more effectively.


Subject(s)
Drug Resistant Epilepsy , Epilepsy , Laser Therapy , Tuberous Sclerosis , Female , Humans , Child , Child, Preschool , Tuberous Sclerosis/complications , Tuberous Sclerosis/surgery , Laser Therapy/methods , Epilepsy/surgery , Seizures/surgery , Drug Resistant Epilepsy/diagnostic imaging , Drug Resistant Epilepsy/etiology , Drug Resistant Epilepsy/surgery , Treatment Outcome , Retrospective Studies , Electroencephalography/methods
12.
Epilepsy Behav ; 138: 108998, 2023 01.
Article in English | MEDLINE | ID: mdl-36436359

ABSTRACT

BACKGROUND: The impact of pandemic has had worse effects in countries with already stretched healthcare resources. study's The study aimed to explore changes in epilepsy care delivery in resource-limited countries during and since the acute phase of the COVID-19 pandemic. METHOD: A cross-sectional survey was conducted in 22 countries among healthcare providers (HCPs) caring for persons with epilepsy (PWE), in collaboration with newly formed global collaborators, the International Epilepsy Equity Group. Findings were compared based on the World Bank Ranking (WBR) and HCPs' practice type. Data were analyzed using Chi-square tests (α = 0.05) and pairwise multiple comparisons with α = 0.017 (Bonferroni adjustment). Open-ended responses were analyzed using thematic analysis. FINDINGS: A total of 241 HCPs participated in the study. Of these, 8.30%, 65.98%, and 21.99% were from high-income (HIC), upper-middle-income (UMIC), and lower-middle-income countries (LMICs), respectively. Among HCPs, 31.12% were adult specialists, and 43.98% were pediatric specialists. During the acute phase of the pandemic, HCPs reported that the major barrier for PWE was difficulty reaching physicians/healthcare providers. Except for difficulty reaching physicians/healthcare providers (WBR P = 0.01 HIC < LMIC), no other significant differences in barriers during the acute phase were observed. Since the acute phase of the pandemic, the major concern for PWE was fear of getting infected with the SARS-CoV-2 virus. Significant differences in concerns since the acute phase included lockdowns (WBR: P = 0.03 UMIC < LMIC), fiscal difficulties (WBR: P < 0.001 UMICs < LMICs, UMICs < HIC; practice type: P = 0.006 adult < others, pediatrics < others), clinic closure (WBR: P = 0.003 UMIC < HIC; practice type: P =< 0.001 adult < others, pediatric < others), and long waiting times (WBR: P = 0.005, LMIC < UMIC, LMIC < HIC; practice type: P = 0.006 pediatric < adults). Diagnostic services, including EEG, MRI, CT (practice type: P < 0.001, adult < others; pediatric < others), and lab work (WBR: P = 0.01 UMIC < HIC), were restricted. The telephone was the most reported teleconsultation method used. Except for SMS/texting (WBR P = 0.02 UMIC < LMIC), there were no significant differences in teleconsultation methods used. DISCUSSION: There is a high probability that the initial wave and consequent reduction of in-person care, restriction of health services, and fiscal difficulties affecting all involved in care delivery, led to the disruption of epilepsy care. Additional support are needed in resource-limited countries to cope with future pandemics.


Subject(s)
COVID-19 , Epilepsy , Adult , Humans , Child , COVID-19/epidemiology , Developing Countries , Cross-Sectional Studies , Pandemics , SARS-CoV-2 , Communicable Disease Control , Delivery of Health Care , Epilepsy/epidemiology , Epilepsy/therapy
13.
Neurology ; 100(7): e719-e727, 2023 02 14.
Article in English | MEDLINE | ID: mdl-36323517

ABSTRACT

BACKGROUND AND OBJECTIVE: Nearly one-third of persons with epilepsy will continue having seizures despite trialing multiple antiseizure medications. Epilepsy surgery may be beneficial in these cases, and evaluation at a comprehensive epilepsy center is recommended. Numerous palliative and potentially curative approaches exist, and types of surgery performed may be influenced by center characteristics. This article describes epilepsy center characteristics associated with epilepsy surgery access and volumes in the United States. METHODS: We analyzed National Association of Epilepsy Centers 2019 annual report and supplemental survey data obtained with responses from 206 adult epilepsy center directors and 136 pediatric epilepsy center directors in the United States. Surgical treatment volumes were compiled with center characteristics, including US Census region. We used multivariable modeling with zero-inflated Poisson regression models to present ORs and incidence rate ratios of receiving a given surgery type based on center characteristics. RESULTS: The response rate was 100% with individual element missingness less than 4% across 352 observations undergoing univariate analysis. Multivariable models included 319 complete observations. Significant regional differences were present. The rates of laser interstitial thermal therapy (LITT) were lower at centers in the Midwest (incidence rate ratio [IRR] 0.74, 95% CI 0.59-0.92; p = 0.006) and Northeast (IRR 0.77, 95% CI 0.61-0.96; p = 0.022) compared with those in the South. Conversely, responsive neurostimulation implantation rates were higher in the Midwest (IRR 1.45, 95% CI 1.1-1.91; p = 0.008) and West (IRR 1.91, 95% CI 1.49-2.44; p < 0.001) compared with the South. Center accreditation level, institution type, demographics, and resources were also associated with variations in access and rates of potentially curative and palliative surgical interventions. DISCUSSION: Epilepsy surgery procedure volumes are influenced by US epilepsy center region and other characteristics. These variations may affect access to specific surgical treatments for persons with drug resistant epilepsy across the United States.


Subject(s)
Drug Resistant Epilepsy , Epilepsy , Adult , Child , Humans , United States/epidemiology , Epilepsy/epidemiology , Epilepsy/surgery , Seizures , Drug Resistant Epilepsy/epidemiology , Drug Resistant Epilepsy/surgery , Palliative Care , Health Facilities
14.
Epilepsia ; 64(1): 127-138, 2023 01.
Article in English | MEDLINE | ID: mdl-36317952

ABSTRACT

OBJECTIVE: Persons with drug-resistant epilepsy may benefit from epilepsy surgery and should undergo presurgical testing to determine potential candidacy and appropriate intervention. Institutional expertise can influence use and availability of evaluations and epilepsy surgery candidacy. This census survey study aims to examine the influence of geographic region and other center characteristics on presurgical testing for medically intractable epilepsy. METHODS: We analyzed annual report and supplemental survey data reported in 2020 from 206 adult epilepsy center directors and 136 pediatric epilepsy center directors in the United States. Test utilization data were compiled with annual center volumes, available resources, and US Census regional data. We used Wilcoxon rank-sum, Kruskal-Wallis, and chi-squared tests for univariate analysis of procedure utilization. Multivariable modeling was also performed to assign odds ratios (ORs) of significant variables. RESULTS: The response rate was 100% with individual element missingness < 11% across 342 observations undergoing univariate analysis. A total of 278 complete observations were included in the multivariable models, and significant regional differences were present. For instance, compared to centers in the South, those in the Midwest used neuropsychological testing (OR = 2.87, 95% confidence interval [CI] = 1.2-6.86; p = .018) and fluorodeoxyglucose-positron emission tomography (OR = 2.74, 95% CI = = 1.14-6.61; p = .025) more commonly. For centers in the Northeast (OR = .46, 95% CI = .23-.93; p = .031) and West (OR = .41, 95% CI = .19-.87; p = .022), odds of performing single-photon emission computerized tomography were lower by nearly 50% compared to those in the South. Center accreditation level, demographics, volume, and resources were also associated with varying individual testing rates. SIGNIFICANCE: Presurgical testing for drug-resistant epilepsy is influenced by US geographic region and other center characteristics. These findings have potential implications for comparing outcomes between US epilepsy centers and may inject disparities in access to surgical treatment.


Subject(s)
Drug Resistant Epilepsy , Epilepsy , Adult , Child , Humans , United States , Epilepsy/diagnosis , Epilepsy/surgery , Drug Resistant Epilepsy/diagnosis , Drug Resistant Epilepsy/surgery , Tomography, Emission-Computed, Single-Photon , Positron-Emission Tomography , Research Design
15.
Epilepsia ; 64(1): 114-126, 2023 01.
Article in English | MEDLINE | ID: mdl-36318088

ABSTRACT

OBJECTIVE: Minimally invasive magnetic resonance-guided laser interstitial thermal therapy (MRgLITT) has been proposed as an alternative to open epilepsy surgery, to address concerns regarding the risk of open surgery. Our primary hypothesis was that seizure freedom at 1 year after MRgLITT is noninferior to open surgery in children with drug-resistant epilepsy (DRE). The secondary hypothesis was that MRgLITT has fewer complications and shorter hospitalization than surgery. The primary objective was to compare seizure outcome of MRgLITT to open surgery in children with DRE. The secondary objective was to compare complications and length of hospitalization of the two treatments. METHODS: This retrospective multicenter cohort study included children with DRE treated with MRgLITT or open surgery with 1-year follow-up. Exclusion criteria were corpus callosotomy, neurostimulation, multilobar or hemispheric surgery, and lesion with maximal dimension > 60 mm. MRgLITT patients were propensity matched to open surgery patients. The primary outcome was seizure freedom at 1 year posttreatment. The difference in seizure freedom was compared using noninferiority test, with noninferiority margin of -10%. The secondary outcomes were complications and length of hospitalization. RESULTS: One hundred eighty-five MRgLITT patients were matched to 185 open surgery patients. Seizure freedom at 1 year follow-up was observed in 89 of 185 (48.1%) MRgLITT and 114 of 185 (61.6%) open surgery patients (difference = -13.5%, one-sided 97.5% confidence interval = -23.8% to ∞, pNoninferiority  = .79). The lower confidence interval boundary of -23.8% was below the prespecified noninferiority margin of -10%. Overall complications were lower in MRgLITT compared to open surgery (10.8% vs. 29.2%, respectively, p < .001). Hospitalization was shorter for MRgLITT than open surgery (3.1 ± 2.9 vs. 7.2 ± 6.1 days, p < .001). SIGNIFICANCE: Seizure outcome of MRgLITT at 1 year posttreatment was inferior to open surgery. However, MRgLITT has the advantage of better safety profile and shorter hospitalization. The findings will help counsel children and parents on the benefits and risks of MRgLITT and contribute to informed decision-making on treatment options.


Subject(s)
Drug Resistant Epilepsy , Laser Therapy , Seizures , Child , Humans , Drug Resistant Epilepsy/surgery , Drug Resistant Epilepsy/therapy , Laser Therapy/methods , Magnetic Resonance Imaging , Retrospective Studies , Seizures/prevention & control , Treatment Outcome
16.
Harmful Algae ; 119: 102335, 2022 11.
Article in English | MEDLINE | ID: mdl-36344194

ABSTRACT

The marine dinoflagellate Alexandrium Halim represents perhaps the most significant and intensively studied genus with respect to species diversity, life history strategies, toxigenicity, biogeographical distribution, and global magnitude and consequences harmful algal blooms (HABs). The socioeconomic impacts, environmental and human health risks, and mitigation strategies for toxigenic Alexandrium blooms have also been explored in recent years. Human adaptive actions based on future scenarios of bloom dynamics and shifts in biogeographical distribution under climate-change parameters remain under development and not yet implemented on a regional scale. In the CoCliME (Co-development of climate services for adaptation to changing marine ecosystems) project these issues were addressed with respect to past, current and anticipated future status of key HAB genera and expected benefits of enhanced monitoring. Data on the distribution and frequency of Alexandrium blooms related to paralytic shellfish toxin (PST) events from key CoCliME Case Study areas, comprising the North Sea and adjacent Kattegat-Skagerrak, Norwegian Sea, and Baltic Sea, and eastern North Atlantic marginal seas, were evaluated in a contemporary and historical context over the past several decades. The first evidence of possible biogeographical expansion of Alexandrium taxa into eastern Arctic gateways was provided from DNA barcoding signatures. Various key climate change indicators, such as salinity, temperature, and water-column stratification, relevant to Alexandrium bloom initiation and development were identified. The possible influence of changing variables on bloom dynamics, magnitude, frequency and spatial and temporal distribution were interpreted in the context of regional ocean climate models. These climate change impact indicators may play key roles in selecting for the occurrence and diversity of Alexandrium species within the broader microeukaryote communities. For example, shifts to higher temperature and lower salinity regimes predicted for the southern North Sea indicate the potential for increased Alexandrium blooms, currently absent from this area. Ecological and socioeconomic impacts of Alexandrium blooms and effects on fisheries and aquaculture resources and coastal ecosystem function are evaluated, and, where feasible, effective adaptation strategies are proposed herein as emerging climate services.


Subject(s)
Climate Change , Dinoflagellida , Humans , Ecosystem , Harmful Algal Bloom , Salinity
17.
Front Physiol ; 13: 818733, 2022.
Article in English | MEDLINE | ID: mdl-35431982

ABSTRACT

The relationship between the muscle deoxygenation breakpoint (Deoxy-BP) measured with near-infrared spectroscopy (NIRS), and the respiratory compensation point (RCP) has been well established. This relationship has also been reported using wearable NIRS, however not in locomotor and non-locomotor muscles simultaneously during whole-body cycling exercise. Our aim was to measure muscle oxygen saturation (SmO2) using wearable NIRS sensors, and to compare the Deoxy-BPs at each muscle with RCP during a ramp cycling exercise test. Twenty-two trained female and male cyclists completed a ramp exercise test to task intolerance on a cycling ergometer, at a ramp rate of 1 W every 2 s (30 W/min). SmO2 was recorded at the subjects' right vastus lateralis (VL) and right lateral deltoid. SmO2 and the Deoxy-BPs were assessed using a piecewise double-linear regression model. Ventilation (V̇E) and gas exchange were recorded, and RCP was determined from V̇E and gas exchange using a V-slope method and confirmed by two physiologists. The SmO2 profiles of both muscles and gas exchange responses are reported as V̇O2, power output (W), and time of occurrence (TO). SmO2 profiles at both muscles displayed a near-plateau or breakpoint response near the RCP. No differences were detected between the mean RCP and mean Deoxy-BP from either the locomotor or non-locomotor muscles; however, a high degree of individual variability was observed in the timing and order of occurrence of the specific breakpoints. These findings add insight into the relationships between ventilatory, locomotor, and non-locomotor muscle physiological breakpoints. While identifying a similar relationship between these breakpoints, individual variability was high; hence, caution is advised when using wearable NIRS to estimate RCP in an incremental ramp test.

18.
Neurology ; 98(19): e1893-e1901, 2022 05 10.
Article in English | MEDLINE | ID: mdl-35292559

ABSTRACT

BACKGROUND AND OBJECTIVES: Persons with epilepsy, especially those with drug resistant epilepsy (DRE), may benefit from inpatient services such as admission to the epilepsy monitoring unit (EMU) and epilepsy surgery. The COVID-19 pandemic caused reductions in these services within the US during 2020. This article highlights changes in resources, admissions, and procedures among epilepsy centers accredited by the National Association of Epilepsy Centers (NAEC). METHODS: We compared data reported in 2019, prior to the COVID-19 pandemic, and 2020 from all 260 level 3 and level 4 NAEC accredited epilepsy centers. Data were described using frequency for categorical variables and median for continuous variables and were analyzed by center level, center population category, and geographical location. Qualitative responses from center directors to questions regarding the impact from COVID-19 were summarized utilizing thematic analysis. Responses from the NAEC center annual reports as well as a supplemental COVID-19 survey were included. RESULTS: EMU admissions declined 23% (-21,515) in 2020, with largest median reductions in level 3 centers [-55 admissions (-44%)] and adult centers [-57 admissions (-39%)]. The drop in admissions was more substantial in the East North Central, East South Central, Mid Atlantic, and New England US Census divisions. Survey respondents attributed reduced admissions to re-assigning EMU beds, restrictions on elective admissions, reduced staffing, and patient reluctance for elective admission. Treatment surgeries declined by 371 cases (5.7%), with the largest reduction occurring in VNS implantations [-486 cases (-19%)] and temporal lobectomies [-227 cases (-16%)]. All other procedure volumes increased, including a 35% (54 cases) increase in corpus callosotomies. DISCUSSION: In the US, access to care for persons with epilepsy declined during the COVID-19 pandemic in 2020. Adult patients, those relying on level 3 centers for care, and many persons in the eastern half of the US were most affected.


Subject(s)
COVID-19 , Drug Resistant Epilepsy , Epilepsy , Adult , Drug Resistant Epilepsy/surgery , Epilepsy/epidemiology , Epilepsy/surgery , Hospitalization , Humans , Pandemics , United States/epidemiology
19.
Harmful Algae ; 112: 102171, 2022 02.
Article in English | MEDLINE | ID: mdl-35144818

ABSTRACT

Diarrhetic Shellfish Poisoning (DSP) results from the human consumption of contaminated shellfish with marine biotoxins, which are produced by some species of marine dinoflagellates, mainly belonging to the genus Dinophysis. Shellfish contamination with marine biotoxins not only pose a threat to human health, but also lead to financial loss to aquaculture operations from the temporary closure of production areas when toxin concentrations exceed regulatory levels. In this study, we developed a Bayesian Network (BN) model for forecasting the short-term variations of DSP toxins in blue mussels (Mytilus edulis) from Bantry Bay, Southwest Ireland. Data inputs to a BN model from 10 production sites in Bantry Bay included plankton cell densities in sea water, DSP toxin concentration in mussels and sea surface temperature. The model was trained with data from 2014 to 2018, and validated with data of 2019. Validation consisted of predicting the DSP toxin concentration at one production site using the model parameters from the other locations as input values. Model validation showed that the prediction accuracy was higher than 86%. Sensitivity analysis indicated that in general, DSP toxin concentration was more relevant than plankton abundance. This initial work has demonstrated the usefulness of BN modeling as an approach to short term forecasting. Further work is ongoing to use the model for scenario testing and to increase the number of environmental parameters used as inputs to the model.


Subject(s)
Mytilus edulis , Shellfish Poisoning , Animals , Bayes Theorem , Bays , Ireland
20.
Epilepsia ; 63(5): 1177-1188, 2022 05.
Article in English | MEDLINE | ID: mdl-35174484

ABSTRACT

OBJECTIVE: A broad spectrum of emotional-behavioral problems have been reported in pediatric temporal lobe epilepsy (TLE), but with considerable variability in their presence and nature of expression, which hampers precise identification and treatment. The present study aimed to empirically identify latent patterns or behavioral phenotypes and their correlates. METHODS: Data included parental ratings of emotional-behavioral status on the Behavior Assessment System for Children, 2nd Edition (BASC-2) of 81 children (mean age = 11.79, standard deviation [SD] = 3.93) with TLE. The nine clinical subscales were subjected to unsupervised machine learning to identify behavioral subgroups. To explore concurrent validity and the underlying composition of the identified clusters, we examined demographic factors, seizure characteristics, psychosocial factors, neuropsychological performance, psychiatric status, and health-related quality of life (HRQoL). RESULTS: Three behavioral phenotypes were identified, which included no behavioral concerns (Cluster 1, 43% of sample), externalizing problems (Cluster 2, 41% of sample), and internalizing problems (Cluster 3, 16% of sample). Behavioral phenotypes were characterized by important differences across clinical seizure variables, psychosocial/familial factors, everyday executive functioning, and HRQoL. Cluster 2 was associated with younger child age, lower maternal education, and higher rate of single-parent households. Cluster 3 was associated with older age at epilepsy onset and higher rates of hippocampal sclerosis and parental psychiatric history. Both Cluster 2 and 3 demonstrated elevated family stress. Concurrent validity was demonstrated through the association of psychiatric (i.e., rate of Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) disorders and psychotropic medication) and parent-rated HRQoL variables. SIGNIFICANCE: Youth with TLE present with three distinct behavioral phenotypes that correspond with important clinical and sociodemographic markers. The current findings demonstrate the variability of behavioral presentations in youth with TLE and provide a preliminary framework for screening and targeting intervention to enhance support for youth with TLE and their families.


Subject(s)
Epilepsy, Temporal Lobe , Adolescent , Child , Epilepsy, Temporal Lobe/complications , Executive Function , Humans , Phenotype , Quality of Life/psychology , Seizures/complications
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