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Published on: June 13, 2016
Approach to Preventive Epilepsy Treatment in Tuberous Sclerosis Complex and Current Clinical Practice in 23 Countries
Monika Słowińska1, Katarzyna Kotulska2, Sylwia Szymańska1
1Department of Pediatric Neurology, Medical University of Warsaw, Warsaw, Poland.
Insights
Early EEG monitoring and preventive epilepsy treatment are increasingly adopted for infants with Tuberous Sclerosis Complex (TSC), despite limited trial data. This approach aims to improve epilepsy and neurodevelopmental outcomes in affected children.
Area of Science:
- Neurology
- Pediatrics
- Epileptology
Background:
- Tuberous Sclerosis Complex (TSC) significantly increases the risk of early-onset epilepsy and developmental delays in children.
- Emerging strategies include EEG monitoring and preventive antiepileptogenic treatment to improve outcomes.
Purpose of the Study:
- To investigate the impact of recent recommendations on epilepsy management practices for children with TSC.
- To assess the current clinical adoption of EEG monitoring and preventive epilepsy treatment in infants with TSC.
Main Methods:
- A global survey was distributed to 165 clinicians involved in TSC research (2016-2019).
- Responses from 61 clinicians across 23 countries, providing neurological care for children with TSC, were analyzed.
- Data collection included approaches to EEG monitoring and preventive epilepsy treatment.
Main Results:
- 95% of surveyed clinicians perform pre-epilepsy onset EEG, and 70% conduct regular EEG monitoring.
- Video EEG is the preferred method for monitoring in 68.8% of centers.
- 51.7% of respondents endorse preventive antiepileptic treatment, with Vigabatrin being the preferred drug for infants under two years old.
Conclusions:
- The principles of pre-epilepsy EEG monitoring and preventive epilepsy treatment are being implemented in most surveyed centers.
- Clinical practice is evolving to incorporate these strategies for managing epilepsy in TSC, even without definitive randomized trial results.
Abstract:
Tuberous sclerosis complex (TSC) is associated with a high risk of early-onset epilepsy and developmental delay. Recently, EEG monitoring in infants with TSC and preventive antiepileptogenic treatment have been proposed to improve epilepsy and neurodevelopmental outcome. We explored how recent studies and recommendations regarding EEG monitoring and preventive epilepsy treatment have influenced the clinical practice of epilepsy management among children with TSC.
Methods:
A survey on the epilepsy management approach in infants with TSC was sent by e-mail to 165 clinicians who actively participated in TSC international research conferences in years 2016 - 2019. Additionally, the e-mail addresses of TSC referral centers were collected from national TSC organizations. The survey was also distributed in the American Epilepsy Society newsletter. Only responses from centers providing neurological care for children with TSC were included in the study.
Results:
Sixty-one responses from 23 countries were analyzed. Sixty respondents answered questions concerning infants, and 57 of 60 respondents (95%) perform at least one EEG study before epilepsy onset and 42 (70.0%) conduct regular EEG monitoring. Most of the clinicians perform video EEG (42/61, 68.8%). Overall, 51.7% of respondents, mostly from Europe, Australia, and South America, endorse preventive antiepileptic treatment in infants with TSC. Vigabatrin is a preferred drug in patients younger than two years old for both focal (61.7%) and generalized (56.7%) seizures.
Conclusions:
Despite the lack of published results of randomized trials, the concepts of preseizure EEG monitoring and epilepsy prevention are already being implemented in the majority of surveyed centers.
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