Emma Jane Norton, Jaspal Singh, Maria-Christina Petropoulos, Jayesh Patel, Nadine McCrea, Ram Kumar, Anil Israni, Dionysios N Grigoratos, Shakti Agrawal, Ffion Williams, Chloe Ec Williams, John Ong Ying Wei, Anca-Mihaela Vasilica, Gokul Parameswaran, Moritz Steinruecke, Shiva A Nischal, Rana Ali Abdelrahim Mohamed, Jeffery Samuel Nicholas Marston, James Madden, Rosaline de Koning, Mehdi Khan, David E Henshall, Mahta Haghighat Ghahfarokhi, Dorota Duklas, Soham Bandyopadhyay, Najma Ahmed, Conor Gillespie
Journal: Epilepsy & behavior : E&B 2023;148():109465
PMID: 37844441
PURPOSE
Benign Epilepsy with Centro-Temporal Spikes (BECTS) is a pediatric epilepsy with typically good seizure control. Although BECTS may increase patients' risk of developing neurological comorbidities, their clinical care and short-term outcomes are poorly quantified.
METHODS
We retrospectively assessed adherence to National Institute for Health and Care Excellence (NICE) guidelines relating to specialist referral, electroencephalogram (EEG) conduct and annual review in the care of patients with BECTS, and measured their seizure, neurodevelopmental and learning outcomes at three years post-diagnosis.
RESULTS
Across ten centers in England, we identified 124 patients (74 male) diagnosed with BECTS between 2015 and 2017. Patients had a mean age at diagnosis of 8.0 (95% CI = 7.6-8.4) years. 24/95 (25%) patients were seen by a specialist within two weeks of presentation; 59/100 (59%) received an EEG within two weeks of request; and 59/114 (52%) were reviewed annually. At three years post-diagnosis, 32/114 (28%) experienced ongoing seizures; 26/114 (23%) had reported poor school progress; 15/114 (13%) were diagnosed with a neurodevelopmental disorder (six autism spectrum disorder, six attention-deficit/hyperactivity disorder); and 10/114 (8.8%) were diagnosed with a learning difficulty (three processing deficit, three dyslexia). Center-level random effects models estimated neurodevelopmental diagnoses in 9% (95% CI: 2-16%) of patients and learning difficulty diagnoses in 7% (95% CI: 2-12%).
CONCLUSIONS
In this multicenter work, we found variable adherence to NICE guidelines in the care of patients with BECTS and identified a notable level of neurological comorbidity. Patients with BECTS may benefit from enhanced cognitive and behavioral assessment and monitoring.
Copyright © 2023 The Author(s). Published by Elsevier Inc. All rights reserved.
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