Ethical Issue as the Limiting Factor for Epilepsy Surgery
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Abstract Epilepsy is one of the most common neurological disorders with almost one-third of these patients becoming intractable to medical treatments. For some of these patients, epilepsy surgery could be the best option. There are lot of disparities in caring of the epilepsy patients. There are multiple limitations in offering epilepsy surgery for the medically intractable epilepsy patients, resulting in almost 19 years gap from the diagnosis of intractable epilepsy to epilepsy surgery. These limitations range from patient or parental fear to lack of available resources. Sometimes we face an ethical issue being the limitation from doing the right thing for the patient. We want to share our experience with one of our patients with symptomatic medically intractable focal epilepsy from Rasmussen’s encephalitis who could not get the epilepsy surgery treatment because of an ethical issue.Keywords:
Intractable epilepsy
Limiting
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Refractory (planetary science)
Drug Resistant Epilepsy
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Intractable epilepsy
Limiting
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Abstract Introduction Family burden (FB) in pediatric patients with drug-resistant epilepsy (DRE) is significantly higher than that in children with non-DRE. Epilepsy surgery is an established approach to treat DRE, and this study examines the impact of pediatric epilepsy surgery on FB. Methods We retrospectively analyzed data of families and pediatric patients with focal structural DRE treated with epilepsy surgery at our epilepsy center from April 2018 to November 2021. We examined the relationship between cognitive, behavioral, and epilepsy-specific data and the FB measured with the German version of the Impact on Family Scale before and after epilepsy surgery. Results The study cohort included 31 children with DRE at a mean age of 9 years at surgery (range = 0–16) and a mean epilepsy duration of 3 years (range = 0–14). Cognitive impairment correlated with FB in children with DRE prior to surgery. At the last assessment, 14.5 months (mean, range = 6–24) after epilepsy surgery, 87.2% of patients were seizure-free, FB values had decreased by 75.0%, and behavioral problems had decreased by 85,7%. Cognitive functions remained stable following epilepsy surgery. Conclusion In children with DRE, epilepsy surgery reduces FB. Given the considerable impact of families on the development and wellbeing of their children, the impact of epilepsy surgery should be communicated to affected families.
Drug Resistant Epilepsy
Pediatric epilepsy
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Background: Epilepsy surgery remains one of the most underused of all current medical interventions. It is estimated that less than 1% of patients with drug-resistant epilepsy are referred to specialized centers. The average delay from onset of seizures to surgical procedures is between 10 to 20 years Methods: In this study we describe the waiting times from the diagnosis of epilepsy to the assessment and epilepsy surgery at the epilepsy center of the University of Saskatchewan (SEP) Results: We included 70 patients assessed in the epilepy program between 2007 and 2015. Mean age of patients was 42.2+13. The time from the diagnosis of epilepsy to the referral was 16 years. The times for the for assesment and testing were the following: to the first consult with the epileptologist was 208 months, to the neuropsychological test was 201 months, to the video-EEG telemetry 219 months, to the first consult to neurosurgery 227 months and finally to the epilepsy surgery was 238 months. Conclusions: This study shows that patients with complex epilepsy in Canada are waiting significant time to be properly diagnosed and treated. Our study shows similar waiting times to otehrdeveloped countries suggesting a global problem in the reference of patients to epilepsy programs.
Drug Resistant Epilepsy
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Intractable epilepsy is a debilitating disease with significant associated morbidity and mortality. Uncontrolled epilepsy is socially disabling causing stigma, social exclusion, and often preventing employment. After an individual has tried and failed three or four of the standard anticonvulsants, it is very unlikely any further medications or combinations of medications will control the epilepsy. The major Neurology, Neurosurgery, and Epilepsy medical societies recommend all individuals with medically intractable epilepsy be evaluated in a comprehensive epilepsy program. In selected individuals, surgery for epilepsy has tremendous potential to cure or control intractable epilepsy. At West Virginia University Health Sciences Center, 48 individuals underwent surgery for intractable temporal lobe epilepsy over a 2.5 year period. Thirty-five (73%) of individuals were seizure free after surgery, and 96% were seizure free or significantly improved. Surgery for epilepsy has a high likelihood for success in medically intractable temporal lobe epilepsy, and is superior to medical treatment alone.
Intractable epilepsy
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Variants in the gene SCN1A are a common genetic cause for a wide range of epilepsy phenotypes ranging from febrile seizures to Dravet syndrome. Focal onset seizures and structural lesions can be present in these patients and the question arises whether epilepsy surgery should be considered. We report eight patients (mean age 13y 11mo [SD 8y 1mo], range 3-26y; four females, four males) with SCN1A variants, who underwent epilepsy surgery. Outcomes were variable and seemed to be directly related to the patient's anatomo-electroclinical epilepsy phenotype. Patients with Dravet syndrome had unfavourable outcomes, whilst patients with focal epilepsy, proven to arise from a single structural lesion, had good results. We conclude that the value of epilepsy surgery in patients with an SCN1A variant rests on two issues: understanding whether the variant is pathogenic and the patient's anatomo-electroclinical phenotype. Careful evaluation of epilepsy phenotype integrated with understanding the significance of genetic variants is essential in determining a patient's suitability for epilepsy surgery. Patients with focal onset epilepsy may benefit from epilepsy surgery, whereas those with Dravet syndrome do not. WHAT THIS PAPER ADDS: Patients should not automatically be excluded from epilepsy surgery evaluation if they carry an SCN1A variant. Patients with focal epilepsy may benefit from epilepsy surgery; those with Dravet syndrome do not.
Dravet syndrome
Epilepsy syndromes
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Drug Resistant Epilepsy
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Drug Resistant Epilepsy
Anterior temporal lobectomy
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Summary Objective To examine national trends of pediatric epilepsy surgery usage in the United States between 1997 and 2009. Methods We performed a serial cross‐sectional study of pediatric epilepsy surgery using triennial data from the Kids’ Inpatient Database from 1997 to 2009. The rates of epilepsy surgery for lobectomies, partial lobectomies, and hemispherectomies in each study year were calculated based on the number of prevalent epilepsy cases in the corresponding year. The age‐race‐sex adjusted rates of surgeries were also estimated. Mann‐Kendall trend test was used to test for changes in the rates of surgeries over time. Multivariable regression analysis was also performed to estimate the effect of time, age, race, and sex on the annual incidence of epilepsy surgery. Results The rates of pediatric epilepsy surgery increased significantly from 0.85 epilepsy surgeries per 1,000 children with epilepsy in 1997 to 1.44 epilepsy surgeries per 1,000 children with epilepsy in 2009. An increment in the rates of epilepsy surgeries was noted across all age groups, in boys and girls, all races, and all payer types. The rate of increase was lowest in blacks and in children with public insurance. The overall number of surgical cases for each study year was lower than 35% of children who were expected to have surgery, based on the estimates from the Connecticut Study of Epilepsy. Significance In contrast to adults, pediatric epilepsy surgery numbers have increased significantly in the past decade. However, epilepsy surgery remains an underutilized treatment for children with epilepsy. In addition, black children and those with public insurance continue to face disparities in the receipt of epilepsy surgery.
Epilepsy in children
Pediatric epilepsy
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