Closing the Diagnostic Gap in Epilepsy: Recognizing More Than Just Motor Seizures

Steriade, Claude

doi:10.1177/1535759721994807

Cited by 5 publications

(2 citation statements)

References 10 publications

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“…These surveys have effectively demonstrated that epilepsy stigma persists universally across different regions, regardless of resources, levels of education, and socioeconomic status. [15] Regrettably, executing door-to-door surveys proves arduous in numerous areas where epilepsy is burdened by substantial social stigma. Individuals grappling with epilepsy may exhibit hesitancy in divulging their medical background, particularly if they endure intermittent seizures or witness a deterioration in their condition.…”

Section: Disease Knowledge Gapsmentioning

confidence: 99%

Impact of Care Gaps in Epileptic Patients in India—A Review

Pandita,

Patel

2024

Preprint

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In India, epilepsy is often viewed with superstition, considered a curse rather than a medical condition. Unfortunately, many affected individuals never receive proper medical attention from neurologists, leading them to seek out alternative remedies, including sorcery. Presently, the number of neurologists in India stands at approximately 3000, a concerning figure given the prevalence of epilepsy, which is reported to affect 5.59 to 10 individuals per 1000. This equates to over one million epilepsy patients across the country, representing more than 1% of the total population. Alarmingly, rural areas experience a higher incidence of epilepsy, around 2%, compared to urban centres, where the incidence is approximately 0.5%. This stark contrast underscores the urgent need for improved access to neurological care, particularly in underserved regions.The term "epilepsy" originates from the Greek verb meaning "to seize" or "to get hold of," forming the basis of its etymology. In certain societies, epilepsy is still interpreted as a "penalty for involvement in a forbidden ritual," although perceptions vary among different cultural groups. Individuals diagnosed with epilepsy (PWE) often exhibit behaviours that have led some to speculate about demonic possession or past-life transgressions as causative factors. Consequently, the term "epilepsy" carries diverse social connotations, leading to variations in treatment approaches based on differing perspectives of the condition. Regrettably, some negative attitudes towards epilepsy have fueled stigma, enduring disability, and significant adverse outcomes for those living with the condition.The majority of unreported cases turn to sorcery, exacerbating the already high mortality rates associated with epilepsy disorder and status epilepticus. Various treatment modalities exist for patients with epilepsy to manage their seizures. Given the debilitating and life-altering nature of epilepsy, India offers a range of options including medications (antiepileptic drugs or AEDs), devices, and surgical interventions. When an individual receives a diagnosis of epilepsy (defined as experiencing at least two unprovoked seizures within a short timeframe), life can be dramatically impacted. Several cases highlight the challenges patients face, leading to an increase in Disability Adjusted Life Years (DALY) overall. For newly born infants, constant vigilance from the mother is essential to monitor for any signs of seizure activity around the clock. When a pediatric patient is enrolled in school, their education is often profoundly disrupted. Should the patient be female, her existence would undergo a profound transformation, marked by societal perceptions deeming her as unfortunate and rendering the prospect of marriage untenable. Seizures in young adults precipitate job loss, thereby exacerbating societal burdens. Conclusion: There is a pressing need to raise awareness about epilepsy among the general populace of India. Dispelling misconceptions surrounding epilepsy is essential to steer individuals away from reliance on superstition, and instead, encourage them to seek guidance from certified specialists in nervous system disorders. Thankfully, by following the treatment regimen prescribed by a qualified neurologist, patients can significantly increase their chances of living a life free from seizures, thereby enhancing their overall quality of life and personal fulfilment.

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Section: Disease Knowledge Gapsmentioning

confidence: 99%

Impact of Care Gaps in Epileptic Patients in India—A Review

Pandita,

Patel

2024

Preprint

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“…Within neurology, this has been particularly successful for stroke treatment, in which public awareness campaigns, mnemonics, and quality improvement have dramatically improved the quality of care ( 9 ). In designing public awareness campaigns, it is important to understand baseline public knowledge on the topic through utilization of qualitative methods so that such efforts can be aimed at improving true gaps in awareness and knowledge ( 10 , 11 ). To date, this represents a relative shortcoming in the literature, as baseline public knowledge has been largely investigated through survey studies in different regions around the world rather than using qualitative methods.…”

Section: Seizure Recognitionmentioning

confidence: 99%

Treatment gaps in epilepsy

Pellinen

2022

Front. Epidemiol.

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Over 50 million people around the world have epilepsy, and yet, epilepsy recognition and access to care are ongoing issues. Nearly 80% of people with epilepsy live in low-and middle-income countries and face the greatest barriers to quality care. However, there are substantial disparities in care within different communities in high-income countries as well. Across the world, under-recognition of seizures continues to be an issue, leading to diagnostic and treatment delays. This stems from issues surrounding stigma, public education, basic access to care, as well as healthcare worker education. In different regions, people may face language barriers, economic barriers, and technological barriers to timely diagnosis and treatment. Even once diagnosed, people with epilepsy often face gaps in optimal seizure control with the use of antiseizure medications. Additionally, nearly one-third of people with epilepsy may be candidates for epilepsy surgery, and many either do not have access to surgical centers or are not referred for surgical evaluation. Even those who do often experience delays in care. The purpose of this review is to highlight barriers to care for people with epilepsy, including issues surrounding seizure recognition, diagnosis of epilepsy, and the initiation and optimization of treatment.

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