Unraveling the Myths Around Epilepsy: A Cross-Sectional Study of Knowledge, Attitude, and Practices Among Pakistani Individuals

Abstract found on PubMed

Introduction: Across its historical trajectory, epilepsy has frequently been linked to evil forces, particularly in the sub-continent. This research was created to find out if educated Pakistanis still believe that epilepsy is caused by being possessed by spirits (Jinns). The objective of the study is to assess the knowledge, attitudes, and practices (KAP) regarding epilepsy within the educated populace of Pakistan.

 

Method: After approval from the Ethical Review Committee, a population-based cross-sectional design was conducted in Chakwal District, Pakistan between February 1, 2018, and June 1, 2020, to evaluate the general knowledge and attitudes of the public toward epilepsy. A non-probability convenience sampling technique was utilized to recruit participants from different socioeconomic backgrounds across Chakwal District, and only individuals aged 18 years or older with at least 12 years of education were eligible to participate. A previously validated structured questionnaire was used to document findings. The study focused on several variables, such as knowledge about epilepsy and the percentage of people who have witnessed seizures, as well as sources of knowledge, subjective causes of epilepsy, beliefs in cure, transmission, and treatment options.

Results: The survey included 512 participants, and the age distribution was as follows: 18-29 years old accounted for 18% of the respondents, 30-44 years old accounted for 35%, and 45-60 years old accounted for 31%. There was a female predominance with a frequency of 312 (60.9%). When asked about their sources of knowledge about epilepsy, the majority of participants (59.57%) reported learning about epilepsy from friends and relatives. A smaller percentage (18.36%) reported learning about epilepsy from schools, while another 20.31% heard about epilepsy from media and relatives.

 

Conclusion: The results of this research show that the general populace of Pakistan has a serious dearth of comprehension and information about epilepsy. Participants frequently held misconceptions about epilepsy being a hereditary disease and a mental condition, highlighting the need for focused education and information efforts to dispel these falsehoods. The fact that most participants got their knowledge about epilepsy from peers and family also emphasizes the value of peer education and social networks in spreading awareness of the disease.

Sleep Problems in Adolescents with Epilepsy and their Caregivers: Associations with Behavioral Difficulties

Abstract found on PubMed

Background: The aim of this study was to investigate the frequency of sleep problems in adolescents with epilepsy and their caregivers. We also examined the behavioural difficulties in adolescents with epilepsy and compared these behaviors with healthy controls.

 

Methods: This observational case-control study included 37 adolescents with epilepsy and their caregivers, and 43 healthy age-matched adolescents and their caregivers. The Children`s Sleep Habits Questionnaire (CSHQ), DSM-5 Level 2 Sleep Disorders Scale for Children, and Strengths & Difficulties Questionnaire (SDQ) were used to evaluate sleep habits, sleep problems, and behavioural difficulties in adolescents. The DSM-5 sleep disorder scale for adults was used to evaluate the caregivers` sleep problems.

 

Results: Adolescents with epilepsy had higher sleep problem scores such as daytime sleepiness and overall sleep problems compared with healthy controls. The psychopathological symptoms such as conduct problems, hyperactivity/inattention, and total behavior were also more frequent in adolescents with epilepsy. There was a nonsignificant increase in DSM-5 sleep disturbance score in caregivers of adolescents with epilepsy. Sleep onset delay had a significant negative correlation with total behavioral difficulties (r = -0.44, p < 0.01), and emotional problems (r = -0.47, p < 0.05) in adolescents with epilepsy. Sleep duration was negatively correlated with conduct problems (r = -0.33, p < 0.05), but positively correlated with prosocial score (r = 0.46, p < 0.01) in adolescents with epilepsy. Night waking was positively correlated with total behavioral difficulties (r = 0.35, p < 0.05) and hyperactivity score (r = 0.38, p < 0.05) in adolescents with epilepsy.

 

Conclusions: Adolescents with epilepsy have more frequent sleep disturbances and maladaptive behaviors such as hyperactivity/inattention, and conduct problems compared with healthy controls, and their caregivers are more vulnerable to sleep problems. Moreover, we also demonstrated a strong association between sleep disturbances and behavioral problems in adolescents with epilepsy.

Silicon Nose: Small Sensor “Smells” Incipient Seizures 

Article published by NewsWise

In people with epilepsy, seizure-alert dogs can smell small changes in body chemistry and warn of an impending seizure an hour or more before it occurs. Inspired by this feat of nature, a team of researchers has sniffed out a way to replicate the ability with technology. 

Sandia National Laboratories and research partner Know Biological have developed a miniaturized sensor system that can detect the specific gases released from the skin of people with epilepsy before a seizure. 

The Sandia-designed device was able to sense the key gases from gauze swiped on a patient’s skin 22 minutes before the onset of a seizure, said Gary Arnold, CEO and founder of Know Biological. 

For people who have epilepsy, knowing they will have a seizure in advance gives time to take medication that can halt most seizures or, at the very least, to get somewhere safe and private. 

“A friend of mine has epilepsy,” Arnold said. “He told me that having a seizure is horrible but that it’s not the worst part of epilepsy. The worst part of epilepsy is never knowing when you’re going to have a seizure. The psychological impact of that uncertainty is overwhelming.” 

Arnold and academic collaborators wanted to know how seizure-alert dogs knew when a seizure was imminent. They identified the presence of several key volatile organic compounds, gases responsible for everything from the smell of fresh-cut grass to the odor of drying nail polish. They discovered that seizure-alert dogs know when a seizure is imminent because they smell the change in body chemistry. 

“We were able to identify a bouquet of eight VOCs that were unique to seizures,” Arnold added. “Of those, three VOCs were considered principal, appearing in every sample taken from someone having a seizure. These VOCs start building in concentration prior to seizure onset.” 

Integrated Psychological Care services within Seizure Settings: Key Components and Implementation Factors Among Example Services in Four ILAE Regions: A Report by the ILAE Psychiatry Commission

Abstract found on Wiley Online Library

Mental health comorbidities are prevalent and problematic in patients with seizures but often suboptimally managed. To address common gaps in care, the Integrated Mental Health Care Pathways Task Force of the International League Against Epilepsy (ILAE) Psychiatry Commission was tasked with providing education and guidance on the integration of mental health management (e.g., screening, referral, treatment) into routine seizure care. This report aims to describe a variety of established services in this area, with a specific focus on psychological care models. Services were identified by members of the ILAE Psychiatry Commission and authors of psychological intervention trials in epilepsy. A total of eight services met inclusion criteria and agreed to be showcased. They include three pediatric and five adult services located across four distinct ILAE regions (Europe, North America, Africa, Asia Oceania). The report describes the core operations, known outcomes, and implementation factors (i.e., barriers and facilitators) of these services. The report concludes with a set of practical tips for building successful psychological care services within seizure settings, including the importance of having local champions, clearly defining the scope of the service, and establishing sustainable funding models. The breadth of exemplars demonstrates how models tailored to the local environment and resources can be implemented. This report is an initial step to disseminate information regarding integrated mental health care within seizure care settings. Future work is needed to systematically examine both psychological and pharmacological care models and to further establish the evidence base in this area, especially around clinical impact, and cost-effectiveness.

People with Focal Epilepsy Often Have Seizures While Driving Before a Diagnosis 

Article published by News Medical Life Science

Prior to being diagnosed with epilepsy, 5% of people with a type of epilepsy called focal epilepsy had a seizure while driving, according to a new study published in the June 7, 2023, online issue of Neurology®, the medical journal of the American Academy of Neurology. 

Focal epilepsy accounts for more than half of all cases of epilepsy. People with this form of epilepsy have recurring seizures that affect one half of the brain.

For the study, researchers identified 447 people with focal epilepsy. Participants had an average age of 29 when they experienced their first seizure.

Researchers looked at participants’ medical records prior to their epilepsy diagnoses. They found 23 people, or 5% of participants, experienced one or more seizures while driving, for a total of 32 seizures while driving prior to diagnosis.

Of the 23 people, seven people, or 30%, had more than one seizure while driving prior to diagnosis. For six people, or 26%, their seizure while driving was their first-ever seizure.

The consequences of these seizures while driving included 19 motor vehicle accidents and 11 hospitalizations for injuries ranging from a tongue bite and a dislocated thumb to a near drowning.

Researchers found that the average time from experiencing a first seizure to experiencing a seizure while driving was 304 days. The average time between a person’s first seizure while driving to being diagnosed with epilepsy was 64 days.

The State of Artificial Intelligence in Epilepsy: Where There Is Progress and Peril Ahead 

Article published by Neurology Today

Remarkable gains in the diagnosis, treatment, and prognosis of epilepsy are heading from the lab to the bedside with the aid of artificial intelligence (AI), according to neurologists and computer scientists who spoke at the first international devoted to the subject.

Among the findings from studies presented at the conference in Breckenridge, CO, researchers reported that an AI program can diagnose genetic forms of epilepsy in children 3.6 years sooner than clinicians can, and that a machine learning program can predict with 85 to 90 percent accuracy who will be seizure-free following ablative surgery.

But clinicians and researchers also emphasized that scientific and ethical concerns must be addressed before the new technologies are rolled out, since few AI programs are ready for the clinic.

“We need to come together as a community and begin to discuss what’s out there, set standards, and lay down some guidelines,” said Samden Lhatoo, MD, FRCP, the John P. and Kathrine G. McGovern Distinguished University Professor of Neurology and director of the Texas Comprehensive Epilepsy Program at UTHealth Houston’s McGovern Medical School.

The learning curve for neurologists seeking to understand the advanced mathematical techniques used to construct AI programs for epilepsy can be steep. One of the prize-winning papers presented at the conference, for instance, described what it called a dynamic brain network model to predict seizures.

“Specifically, we use the source-sink (SS) metric to quantify each node by its connectivity properties to other nodes in the network,” stated the paper, whose first author was Amir Hossein Daraie, a PhD student in the biomedical engineering department at Johns Hopkins University School of Medicine.

For Epilepsy Sufferers, Cutting-Edge Technology Offers Early Alerts Of Seizures 

Article published by Science Blog

People with epilepsy could soon get a one-minute warning of an impending seizure with the help of a new medical device.

An epileptic seizure can put a person at risk of injury in everyday situations that most other people take for granted. Often this leads sufferers to avoid common activities such as cycling, swimming or walking up steep inclines.

But wearers of the new device can be reassured that they will get an alert before the onset of a seizure and take necessary precautions. Dr David Blánquez, an engineer, was inspired to invent the earpiece for very personal reasons.

‘We started this project because of my daughter Marina, who has epilepsy,’ Blánquez said.

He had been a robotics researcher but saw the need for people like his daughter to wear a device that could warn them about an approaching convulsion.

The earpiece signals an app on the patient’s mobile phone that a seizure is likely. A family member or caregiver can also be alerted.

The device constantly monitors brain activity using an electroencephalogram, logging key medical information and building up an algorithm that over time gets better at spotting the signs of an impending seizure.

Pesticide Exposure Increases the Risk of All Seizure Disorders, Especially Epilepsy

Article published by Beyond Pesticides 

A study published in NeuroToxicology finds occupational (work-related), chronic exposure to pesticides increases risk factors of epilepsy, a neurological disorder causing unprovoked, reoccurring seizures. Mounting evidence over the past years shows that chronic exposure to sublethal (low) levels of pesticides can cause neurotoxic effects or exacerbate preexisting chemical damage to the nervous system. Although the mechanism by which pesticides induce disease development remains unclear, this study suggests environmental pesticide exposure increases seizure risk through mechanisms at molecular or subcellular levels.

Approximately 3.4 million individuals in the U.S. live with epilepsy, and mortality from this disorder is rising nationwide. Over 300 environmental contaminants and their byproducts, including pesticides, are chemicals commonly present in human blood and urine samples and can increase neurotoxicity risk when crossing the brain barrier. Considering half of all epilepsy etiologies (causes) are of idiopathic (unknown) origins, studies like this highlight the importance of understanding how consistent chemical exposure can impact long-term health and disease prognosis. The study notes, “[The] approach to a real-world exposure scenario to pesticides in a large agriculture area over 17 years; […] can be linked to the novel approaches proposed for simulating real-life exposures, thus contributing to a better understanding of the real-life risk associated with long-term exposure to multiple pesticides.”

To determine work-related risk factors associated with epilepsy among farmers and pesticide applicators, researchers performed a case-control study on 19,704 individuals from 2000 to 2016 (17 years) to observe epilepsy cases. Researchers gathered data from Almería (South-Eastern Spain) hospital records and the Centre for Prevention of Occupational Risks. Of the 19,704 individuals, 5,091 have a record of epilepsy. The researchers attribute an increase in epilepsy risk among those working in chemical-intensive, enclosed (indoor) agriculture (high-yield greenhouse crops) compared to chemical-intensive, open-air (outdoor) agriculture (open-air crops). However, this study supports previous findings on the association between epilepsy and pesticide exposure in the general population. Epilepsy risk is greatest among individuals living in rural areas with high pesticide use (e.g., farming regions) and individuals without proper personal protective equipment (PPE), including gloves and masks.

The Impact of Epilepsy Surgery on Quality of Life: Systematic Review and Meta-Analysis

Abstract found on Wiley Online Library

Objectives: Improved quality of life (QoL) is an important outcome goal following epilepsy surgery. This study aims to quantify change in QoL for adults with drug-resistant epilepsy (DRE) who undergo epilepsy surgery, and to explore clinicodemographic factors associated with these changes.

Methods: We conducted a systematic review and meta-analysis using Medline, EMBASE, and Cochrane Central Register of Controlled Trials. All studies reporting pre- and post-epilepsy surgery QoL scores in adults with DRE via validated instruments were included. Meta-analysis assessed the post-surgery change in QoL. Meta-regression assessed the effect of post-operative seizure outcomes on post-operative QoL as well as change in pre- and post-operative QoL scores.

Results: 3,774 titles and abstracts were reviewed and ultimately 16 studies, comprising 1182 unique patients, were included. QOLIE-31 (Quality of Life in Epilepsy Inventory- 31 item) meta-analysis included six studies and QOLIE-89 meta-analysis included four studies. Post-operative change in raw score was 20.5 for QOLIE-31 (95% CI: 10.9–30.1, I2=?95.5) and 12.1 for QOLIE-89 (95% CI: 8.0–16.1, I2=?55.0%). This corresponds to clinically meaningful QOL improvements. Meta-regression demonstrated a higher post-operative QOLIE-31 score as well as change in pre- and post-operative QOLIE-31 score among studies of cohorts with higher proportions of patients with favorable seizure outcomes. At an individual study level, pre-operative absence of mood disorders, better pre-operative cognition, fewer trials of antiseizure medications before surgery, high levels of conscientiousness and openness to experience at the baseline, engagement in paid employment before and after surgery, and not being on antidepressants following surgery were associated with improved post-operative QoL.

Significance: This study demonstrates the potential for epilepsy surgery to provide clinically meaningful improvements in QoL, as well as identifies clinicodemographic factors associated with this outcome. Limitations include substantial heterogeneity between individual studies, and high risk of bias.

Disadvantage and Neurocognitive Comorbidities in Childhood Idiopathic Epilepsies

Abstract found on Wiley Online Library

Objective: This study was undertaken to characterize the relationship between neighborhood disadvantage and cognitive function as well as clinical, sociodemographic, and family factors in children with new onset idiopathic epilepsy and healthy controls.

Methods: Research participants were 288 children aged 8–18?years with recent onset epilepsy (CWE; n?=?182; mean age?=?12.2?±3.2?years), healthy first-degree cousin controls (HC; n?=?106; mean age?=?12.5±3.0), and one biological or adopted parent per child (n?=?279). All participants were administered a comprehensive neuropsychological battery (reasoning, language, memory, executive function, motor function, and academic achievement). Family residential addresses were entered into the Neighborhood Atlas to determine each family’s Area Deprivation Index (ADI), a metric used to quantify income, education, employment, and housing quality. A combination of parametric and nonparametric (?2) tests examined the effect of ADI by group (epilepsy and controls) across cognitive, academic, clinical, and family factors.

Results: Disadvantage (ADI) was equally distributed between groups (p?=?.63). For CWE, high disadvantage was associated with lower overall intellectual quotient (IQ; p?=?.04), visual naming/expressive language (p?=?.03), phonemic (letter) fluency (p?<?.01), passive inattention (omission errors; p?=?.03), delayed verbal recall (p?=?.04), and dominant fine motor dexterity and speed (p?<?.01). Cognitive status of the HC group did not differ by level of disadvantage (p?=?.40). CWE exhibited greater academic difficulties in comparison to HC (p?<?.001), which were exacerbated by disadvantage in CWE (p?=?.02) but not HC (p?<?.05). High disadvantage was associated with a threefold risk for academic challenges prior to epilepsy onset (odds ratio?=?3.31, p?=?.024).

Significance: Socioeconomic hardship (increased neighborhood disadvantage) exerts a significant adverse impact on the cognitive and academic status of youth with new and recent onset epilepsies, an impact that needs to be incorporated into etiological models of the neurobehavioral comorbidities of epilepsy.