Care and three-year outcomes of children with Benign Epilepsy with Centro-Temporal Spikes in England.

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

Abstract

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.

Address: Edinburgh Medical School, College of Medicine and Veterinary Medicine, The University of Edinburgh, UK; University of Cambridge School of Clinical Medicine, UK. Electronic address: [email protected].; School of Medicine, University of Liverpool, UK; Department of Clinical Neurosciences, University of Cambridge, UK.; GKT School of Medical Education, Faculty of Life Sciences and Medicine, King's College London, UK.; Clinical Neurosciences, School of Clinical and Experimental Sciences, University of Southampton, UK; Wessex Neurological Centre, University Hospital Southampton NHS Foundation Trust, UK; Oxford University Global Surgery Group, Nuffield Department of Surgical Sciences, University of Oxford, UK.; Bristol Medical School, University of Bristol, UK.; Deanery of Clinical Sciences, Edinburgh Medical School, College of Medicine and Veterinary Medicine, The University of Edinburgh, UK.; UCL Medical School, Faculty of Medical Sciences, University College London, UK.; Medical Sciences Division, University of Oxford, UK.; University Hospital Southampton NHS Foundation Trust, UK.; Paediatric Neurology, Birmingham Women's and Children's NHS Foundation Trust, UK.; University of Cambridge School of Clinical Medicine, UK.; University Division of Anaesthesia, University of Cambridge, UK; Faculty of Medicine, University of Southampton, UK.; College of Medical and Dental Sciences, University of Birmingham, UK.; School of Medicine, University of Liverpool, UK; Royal Liverpool University Hospital, Liverpool University Hospitals NHS Foundation Trust, UK.; Princess Royal University Hospital, King's College Hospital NHS Foundation Trust, UK.; Alder Hey Children's Hospital, Alder Hey Children's NHS Foundation Trust, UK; Faculty of Medicine, Parul University, India.; Alder Hey Children's Hospital, Alder Hey Children's NHS Foundation Trust, UK.; John Radcliffe Hospital, Oxford University Hospitals NHS Foundation Trust, UK.; Bristol Royal Hospital for Children, University Hospitals Bristol and Weston NHS Foundation Trust, UK.; UCL Medical School, Faculty of Medical Sciences, University College London, UK; University College Hospital, University College London Hospitals NHS Foundation Trust, UK.
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