Objective
In order to more appropriately apply and understand the “epilepsy treatment gap” (ETG) concept in current health systems, revised conceptual and operational definitions of ETG are timely ...and necessary. This article therefore systematically reviews worldwide studies of the ETG, distinguishing high‐, middle‐, and low‐income regions, and provides recommendations for an updated International League Against Epilepsy (ILAE) definition of ETG.
Methods
A systematic review of the ETG was performed using Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) standards. The search was conducted from January 1990 to July 2019, in the online databases of Ovid MEDLINE and Embase. Identified s were reviewed in duplicate and data independently extracted using a standard proforma. Data describing treatment gap information including both diagnostic and therapeutic aspects of access to epilepsy treatment were recorded. Descriptive statistics are presented.
Results
The treatment gap reported in the 45 distinctive populations represented 33 countries. Treatment gap definitions varied widely. The reported ETGs ranged broadly from 5.6% in Norway to 100% in parts of Tibet, Togo, and Uganda. The wide range of reported ETGs was multifactorial in origin including true differences in the availability and utilization of health care among study populations, variations in operational definitions of the epilepsy treatment gap, and methodological differences in sampling and identifying representative epilepsy cases in populations.
Significance and recommendations
For the ETG to be a useful metric to compare levels of unmet epilepsy care across different countries and regions, a standardized definition must be adapted, recognizing some of the limitations of the current definitions. Our proposed definition takes into account the lack of effective health care insurance, the diagnostic gap, the therapeutic gap, quality‐of‐care, and other unmet health care needs.”
Objective
Global action for epilepsy requires information on the cost of epilepsy, which is currently unknown for most countries and regions of the world. To address this knowledge gap, the ...International League Against Epilepsy Commission on Epidemiology formed the Global Cost of Epilepsy Task Force.
Methods
We completed a systematic search of the epilepsy cost‐of‐illness literature and identified studies that provided a comprehensive set of direct health care and/or indirect costs, followed standard methods of case identification and cost estimation, and used data on a representative population or subpopulation of people with epilepsy. Country‐specific costs per person with epilepsy were extracted and adjusted to generate an average cost per person in 2019 US dollars. For countries with no cost data, estimates were imputed based on average costs per person of similar income countries with data. Per person costs for each country were then applied to data on the prevalence of epilepsy from the Global Burden of Disease collaboration adjusted for the treatment gap.
Results
One hundred one cost‐of‐illness studies were included in the direct health care cost database, 74 from North America or Western Europe. Thirteen studies were used in the indirect cost database, eight from North America or Western Europe. The average annual cost per person with epilepsy in 2019 ranged from $204 in low‐income countries to $11 432 in high‐income countries based on this highly skewed database. The total cost of epilepsy, applying per person costs to the estimated 52.51 million people in the world with epilepsy and adjusting for the treatment gap, was $119.27 billion.
Significance
Based on a summary and extrapolations of this limited database, the global cost of epilepsy is substantial and highly concentrated in countries with well‐developed health care systems, higher wages and income, limited treatment gaps, and a relatively small percentage of the epilepsy population.
The coronavirus disease 2019 (COVID‐19) pandemic has affected the care of all patients around the world. The International League Against Epilepsy (ILAE) COVID‐19 and Telemedicine Task Forces ...examined, through surveys to people with epilepsy (PWE), caregivers, and health care professionals, how the pandemic has affected the well‐being, care, and services for PWE. The ILAE included a link on their website whereby PWE and/or their caregivers could fill out a survey (in 11 languages) about the impact of the COVID‐19 pandemic, including access to health services and impact on mental health, including the 6‐item Kessler Psychological Distress Scale. An anonymous link was also provided whereby health care providers could report cases of new‐onset seizures or an exacerbation of seizures in the context of COVID‐19. Finally, a separate questionnaire aimed at exploring the utilization of telehealth by health care professionals since the pandemic began was available on the ILAE website and also disseminated to its members. Seventeen case reports were received; data were limited and therefore no firm conclusions could be drawn. Of 590 respondents to the well‐being survey (422 PWE, 166 caregivers), 22.8% PWE and 27.5% caregivers reported an increase in seizure frequency, with difficulty in accessing medication and health care professionals reported as barriers to care. Of all respondents, 57.1% PWE and 21.5% caregivers had severe psychological distress (k score >13), which was significantly higher among PWE than caregivers (p<0.01). An increase in telemedicine use during the COVID‐19 pandemic was reported by health care professionals, with 40% of consultations conducted by this method. Although 74.9% of health care providers thought that this impacted positively, barriers to care were also identified. As we move forward, there is a need to ensure ongoing support and care for PWE to prevent a parallel pandemic of unmet health care needs.
Objective
Despite national guidelines supporting surgical referral in drug‐resistant epilepsy, it is hypothesized that surgery is underutilized. We investigated the volumes of ...lobectomy/amygdalohippocampectomy surgeries over time and examined differences in outcomes between (1) high‐volume (HV), middle‐volume (MV), and low‐volume (LV) hospitals and (2) Level 4 Centers versus non–Level 4 Centers.
Methods
The 2003‐2014 National Inpatient Sample (the largest all‐payer hospitalization database, representative of the US population) was utilized. Epilepsy was identified using a previously validated International Classification of Diseases, Ninth Revision, Clinical Modification (ICD‐9‐CM) case definition and surgeries using ICD‐9‐CM procedure codes. A hospital was considered a Level 4 Center if it performed intracranial electroencephalographic (EEG) monitoring. Tumor surgeries were excluded. Linear regression was used to perform trend tests. Weighted multivariate logistic regression was used to summarize association of surgery with outcomes.
Results
A total of 4,487 lobectomy/amygdalohippocampectomy surgeries were performed in children and adults with epilepsy. Lobectomy/amygdalohippocampectomy surgeries significantly decreased over time (slope: −0.24, P < .001). This declining surgical trend was greater for all resective/disconnective surgery (slope: −0.45, P < .001), and greatest when compared to all types of epilepsy surgery, for example, resection/disconnection/radiosurgery/laser interstitial thermal therapy/vagus nerve stimulation/deep brain stimulation/responsive neurostimulation/intracranial EEG (slope: −0.95, P < .001). LV compared to HV hospitals had higher odds of transfer to other facilities (13.60% vs 4.24%, odds ratio OR = 2.76, 95% confidence interval CI = 1.11‐6.82). LV hospitals had higher odds of surgical complications versus MV (12.69% vs 6.80%, OR = 2.20, 95% CI = 1.01‐5.09). HV hospitals incurred the least total charges. There were no differences in discharge status, adverse events, length of stay, or cost between Level 4 Centers versus non–Level 4 Centers.
Significance
Lobectomies/amygdalohippocampectomies are decreasing over time, suggesting ongoing underutilization. LV centers are associated with greater complication and transfer rates. Future studies are required to understand the reason for worse outcomes in LV centers and to determine whether a minimum number of surgeries must be performed to meet necessary standards.
Objective
Summarize the current evidence on efficacy and tolerability of vagus nerve stimulation (VNS), responsive neurostimulation (RNS), and deep brain stimulation (DBS) through a systematic review ...and meta‐analysis.
Methods
We followed the Preferred Reporting Items of Systematic reviews and Meta‐Analyses reporting standards and searched Ovid Medline, Ovid Embase, and the Cochrane Central Register of Controlled Trials. We included published randomized controlled trials (RCTs) and their corresponding open‐label extension studies, as well as prospective case series, with ≥20 participants (excluding studies limited to children). Our primary outcome was the mean (or median, when unavailable) percentage decrease in frequency, as compared to baseline, of all epileptic seizures at last follow‐up. Secondary outcomes included the proportion of treatment responders and proportion with seizure freedom.
Results
We identified 30 eligible studies, six of which were RCTs. At long‐term follow‐up (mean 1.3 years), five observational studies for VNS reported a pooled mean percentage decrease in seizure frequency of 34.7% (95% confidence interval CI: −5.1, 74.5). In the open‐label extension studies for RNS, the median seizure reduction was 53%, 66%, and 75% at 2, 5, and 9 years of follow‐up, respectively. For DBS, the median reduction was 56%, 65%, and 75% at 2, 5, and 7 years, respectively. The proportion of individuals with seizure freedom at last follow‐up increased significantly over time for DBS and RNS, whereas a positive trend was observed for VNS. Quality of life was improved in all modalities. The most common complications included hoarseness, and cough and throat pain for VNS and implant site pain, headache, and dysesthesia for DBS and RNS.
Significance
Neurostimulation modalities are an effective treatment option for drug‐resistant epilepsy, with improving outcomes over time and few major complications. Seizure‐reduction rates among the three therapies were similar during the initial blinded phase. Recent long‐term follow‐up studies are encouraging for RNS and DBS but are lacking for VNS.
Summary
Purpose
Underutilization of epilepsy surgery remains a major problem and is in part due to physicians' misconceptions about the risks associated with epilepsy surgery. The purpose of this ...study was to systematically review the literature on complications of focal epilepsy surgery.
Methods
A literature search was conducted using PubMed and Embase to identify studies examining epilepsy surgery complications. and full text review, along with data extraction, was done in duplicate. Minor medical and neurologic complications were defined as those that resolved completely within 3 months of surgery, whereas major complications persisted beyond that time frame. Descriptive statistics were used to report complication proportions.
Key Findings
Invasive monitoring: Minor complications were reported in 7.7% of patients, whereas major complications were reported in only 0.6% of patients undergoing invasive monitoring. Resective surgery: Minor and major medical complications were reported in 5.1% and 1.5% of patients respectively, most common being cerebrospinal fluid (CSF) leak. Minor neurologic complications occurred in 10.9% of patients and were twice as frequent in children (11.2% vs. 5.5%). Minor visual field defects were most common (12.9%). Major neurologic complications were noted in 4.7% of patients, with the most common being major visual field defects (2.1% overall). Perioperative mortality was uncommon after epilepsy surgery, occurring in only 0.4% of temporal lobe patients (1.2%extratemporal).
Significance
The majority of complications after epilepsy surgery are minor or temporary as they tend to resolve completely. Major permanent neurologic complications remain uncommon. Mortality as a result of epilepsy surgery in the modern era is rare.
Objective
To review the evidence of felt and enacted stigma and attitudes toward persons living with epilepsy, and their determining factors.
Methods
Thirteen databases were searched (1985–2019). s ...were reviewed in duplicate and data were independently extracted using a standardized form. Studies were characterized using descriptive analysis by whether they addressed “felt” or “enacted” stigma and “attitudes” toward persons living with epilepsy.
Results
Of 4234 s, 132 met eligibility criteria and addressed either felt or enacted stigma and 210 attitudes toward epilepsy. Stigma frequency ranged broadly between regions. Factors associated with enacted stigma included low level of knowledge about epilepsy, lower educational level, lower socioeconomic status, rural areas living, and religious grouping. Negative stereotypes were often internalized by persons with epilepsy, who saw themselves as having an “undesirable difference” and so anticipated being treated differently. Felt stigma was associated with increased risk of psychological difficulties and impaired quality of life. Felt stigma was linked to higher seizure frequency, recency of seizures, younger age at epilepsy onset or longer duration, lower educational level, poorer knowledge about epilepsy, and younger age. An important finding was the potential contribution of epilepsy terminology to the production of stigma. Negative attitudes toward those with epilepsy were described in 100% of included studies, and originated in any population group (students, teachers, healthcare professionals, general public, and those living with epilepsy). Better attitudes were generally noted in those of younger age or higher educational status.
Significance
Whatever the specific beliefs about epilepsy, implications for felt and enacted stigma show considerable commonality worldwide. Although some studies show improvement in attitudes toward those living with epilepsy over time, much work remains to be done to improve attitudes and understand the true occurrence of discrimination against persons with epilepsy.
Epilepsy surgery is the treatment of choice for patients with drug‐resistant seizures. A timely evaluation for surgical candidacy can be life‐saving for patients who are identified as appropriate ...surgical candidates, and may also enhance the care of nonsurgical candidates through improvement in diagnosis, optimization of therapy, and treatment of comorbidities. Yet, referral for surgical evaluations is often delayed while palliative options are pursued, with significant adverse consequences due to increased morbidity and mortality associated with intractable epilepsy. The Surgical Therapies Commission of the International League Against Epilepsy (ILAE) sought to address these clinical gaps and clarify when to initiate a surgical evaluation. We conducted a Delphi consensus process with 61 epileptologists, epilepsy neurosurgeons, neurologists, neuropsychiatrists, and neuropsychologists with a median of 22 years in practice, from 28 countries in all six ILAE world regions. After three rounds of Delphi surveys, evaluating 51 unique scenarios, we reached the following Expert Consensus Recommendations: (1) Referral for a surgical evaluation should be offered to every patient with drug‐resistant epilepsy (up to 70 years of age), as soon as drug resistance is ascertained, regardless of epilepsy duration, sex, socioeconomic status, seizure type, epilepsy type (including epileptic encephalopathies), localization, and comorbidities (including severe psychiatric comorbidity like psychogenic nonepileptic seizures PNES or substance abuse) if patients are cooperative with management; (2) A surgical referral should be considered for older patients with drug‐resistant epilepsy who have no surgical contraindication, and for patients (adults and children) who are seizure‐free on 1–2 antiseizure medications (ASMs) but have a brain lesion in noneloquent cortex; and (3) referral for surgery should not be offered to patients with active substance abuse who are noncooperative with management. We present the Delphi consensus results leading up to these Expert Consensus Recommendations and discuss the data supporting our conclusions. High level evidence will be required to permit creation of clinical practice guidelines.
Abstract
Autism and epilepsy commonly co‐occur. Understanding trends in healthcare utilization and in‐hospital outcomes amongst patients with autism and epilepsy can help optimize care and reduce ...costs. We compared hospital outcomes amongst patients with autism and epilepsy to those with epilepsy alone undergoing vagus nerve stimulation (VNS) and resective/disconnective surgery. Differences in discharge status, in‐hospital mortality, mean length of stay (LOS), cost and surgical/medical complications were examined. Elective surgical admissions amongst patients with epilepsy alone and co‐occurring autism and epilepsy were identified in the 2003–14 National Inpatient Sample (NIS) using previously validated ICD‐9‐CM case definitions. One patient with co‐occurring epilepsy and autism was matched to three epilepsy patients for age, sex and (1) VNS and (2) resective/disconnective surgery. Multinomial logistic regressions were performed to examine the outcomes of interest. Data were collected on: (1) VNS‐52 (mean age: 12.79 ± 1.03; 19.27% female) hospital admissions in persons with comorbid autism and epilepsy, 156 (mean age: 12.84 ± 0.71; 19.31% female) matched controls with epilepsy alone; (2) resective/disconnective surgery‐113 (mean age: 12.99 ± 0.84; 24.55% female) with comorbid autism and epilepsy, 339 (mean age: 13.37 ± 0.68; 23.86% female) matched controls with epilepsy alone. Compared to patients with epilepsy alone, patients with autism and epilepsy who underwent either surgery showed no differences for in‐hospital mortality, discharge status, mean LOS, hospitalization cost, and surgical/medical complications. Our study shows the feasibility and safety of epilepsy VNS and resective surgery in those with ASD do not differ with those with epilepsy alone, contrary to the prevalent safety concerns of epilepsy surgery in patients with ASD.
Lay Summary
Drug resistant epilepsy is common in patients with ASD. However, surgery is particularly underutilized in this population. In our investigation of barriers to epilepsy surgical access in ASD patients, we show that hospital outcomes are equivalent in those with and without ASD.
We aimed to review the literature to determine the incidence and prevalence of autism in epilepsy and epilepsy in autism, conditions that are often comorbid.
We adhered to the PRISMA (Preferred ...Reporting Items for Systematic Reviews and Meta-Analyses) standards, and the protocol was registered with PROSPERO. MEDLINE, Embase, PsycINFO, and the Cochrane Database of Systematic Reviews were searched from inception until July 4, 2016. Studies were included if they reported an incidence or prevalence of autism in epilepsy or epilepsy in autism. These estimates were described using mean, standard deviation, median, and interquartile range.
Seventy-four studies reporting on 283,549 patients were included. The median overall period prevalence of epilepsy in people with autism was 12.1% while the median overall period prevalence of autism in people with epilepsy was 9.0% when including all population types. When excluding studies that investigated patients with syndromic epilepsy or developmental delay, the median overall period prevalence of epilepsy in people with autism was 11.2% while the median overall period prevalence of autism in people with epilepsy was 8.1%. We observed trends for sex as the prevalence of autism in epilepsy was higher in males while the prevalence of epilepsy in autism was higher in females. It is important to interpret these estimates with caution, as there was significant heterogeneity between studies. Meta-regression found no association between study quality and prevalence or incidence estimates (all p-values > 0.05).
The period prevalence of epilepsy in people with autism, and vice versa, was consistently higher than previously reported estimates of the occurrence of these disorders in the general population. These findings highlight the importance of screening for autism in people who have epilepsy and epilepsy in people who have autism and may help shed light on shared pathogenesis between these conditions.
•Autism and epilepsy often co-occur, which has implications for patient management and outcomes.•This study synthesized data on the incidence and prevalence of autism in epilepsy and vice-versa from 74 studies.•The median overall period prevalence of epilepsy in people with autism was 12.1% (range: 1.8-60%).•The median overall period prevalence of autism in people with epilepsy was 9.0% (range: 0.60-41.9%).•The period prevalence of epilepsy in people with autism, and vice-versa, was higher than estimates in general populations.
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