Impact case study database

Approximately 35,000 children and young people in the UK experience severe uncontrolled epilepsy that is associated with a reduced quality of life and around 440 children each year could benefit from surgery. Clinical scientists at UCL GOS ICH led developments in MRI scanning that are now incorporated into international guidelines and help clinicians to identify children who will benefit from surgery, to reduce epileptic seizures and improve cognitive outcomes. In 2019, 345 children in the UK were treated with surgery and 85% of them have subsequently stopped having seizures completely. In addition, the UCL team has developed open access training tools and established international expert networks that mean in Europe many more children and young adults can now gain access to and benefit from epilepsy surgery.

Consensus recommendations for epilepsy surgery

The UCL GOS ICH team has led international initiatives to establish benchmarks and standards for epilepsy surgery in childhood. In 2014, Professor Cross led on a consensus document published by the International League Against Epilepsy (ILAE) on diagnostic techniques for use in presurgical evaluation in children. The published care pathway is now utilised worldwide as standard ( S1). Cross was also part of the expert group selected by the ILAE that developed best practice recommendations for epilepsy surgery procedures to maximise chances of seizure control and help minimise cognitive deficits ( S2) .

Developments from UCL research are now embedded in new standards for paediatric epilepsy surgery centres worldwide, which state: “Level 1 care consists of children age 9 years and older, with discrete lesions including hippocampal sclerosis, undergoing lobectomy or lesionectomy, preferably on the cerebral convexity and not close to eloquent cortex, by a team … with access to video-electroencephalography and 1.5-T magnetic resonance imaging (MRI). Level 2 care, also encompassing Level 1 care, occurs across the age span and range of etiologies … associated with MRI lesions that may be ill-defined, multilobar, hemispheric, or multifocal, and includes children with normal MRI or foci in/abutting eloquent cortex. Available Level 2 technologies includes 3-T MRI, other advanced magnetic resonance technology including functional MRI and diffusion tensor imaging (tractography), positron emission tomography and/or single photon emission computed tomography, source localization with electroencephalography or magnetoencephalography, and the ability to perform intra- or extraoperative invasive monitoring and functional mapping.”( S3).

Open access software to support clinical assessment and selection for epilepsy surgery.

Since 2013, the UCL team has initiated a multi-centre effort to develop a large training data set - the ‘Multi-centre Epilepsy Lesion Detection’ (MELD) project ( S4) that uses software tools developed at UCL to support identification of suitable cases for surgery. The consortium continues to contribute scan data to further develop the tools for lesion detection and normalisation techniques, through machine learning. The MELD cohort currently comprises over 550 FCD patients and 382 controls, with 26 participating centres internationally, including in Brazil, China, Finland, Spain and US. Participating sites use their own data for clinical planning comparing it to data from collaborating centres and allowing them to identify more patients suitable for epilepsy surgery who would have been missed using standard clinical evaluation ( S4). The President of the American Epilepsy Society said, “This program has been at the forefront of investigation and advances that have demonstrated improved outcomes of paediatric epilepsy surgery in addition advocating for epilepsy surgery in children. Critical to success has been a series of elegant studies that have improved and broadened patient selection for epilepsy surgery, delineated benefits of surgery on seizure control and cognition, and introduced techniques and technology that have improved outcomes. Among these projects is MELD, an initiative that has organized collaboration of leading epilepsy centres from across the globe (including our centre), that has provided novel insights into the location and epileptogenic potential of focal cortical dysplasia (FCD)” ( S5).

Increasing the number of children benefiting from epilepsy surgery

The UCL GOS ICH research has highlighted the value in increasing epilepsy surgery as an intervention for severe epilepsy, demonstrating that early surgery and subsequent weaning from medication can arrest cognitive decline and estimating that up to 440 children per year in England would benefit. The team has campaigned for change, driving the development of the Children’s Epilepsy Surgery Service (CESS), established in 2012 and to which Professor Cross remains clinical advisor ( S6). Since 2013, CESS has supported a three-fold increase in the number of children being assessed for and receiving epilepsy surgery in England. In 2019, 345 children were treated with surgery and 85% of them have stopped having seizures completely, with many discontinuing drug therapy, thereby arresting a progressive decline in IQ and educational attainment.

Cross co-led a successful bid to establish a European Union funded pilot network for epilepsy surgery – “E-pilepsy”, to increase awareness and availability of epilepsy surgery across Europe. In 2016, Cross instigated the Reference Network for Rare and Complex Epilepsies (EpiCARE) with further EU funding. This is a network of 52 specialist health care providers/centres and a further 15 affiliated centres across 24 countries who work together to provide specialist advice on treatments for complex epilepsy cases. ‘E-pilepsy’ remains the surgical arm of EpiCARE. A care pathway exists for referral of patients into the pathway for discussion ( S7). The Chair of the European Epilepsy Network said: “Their [Cross and Baldeweg’s] work in advancing imaging options and outcomes has widened the spectrum of children suitable for surgery and established epilepsy surgery as an early management option in selected candidates, improving long term outcomes in these children… There is no question that the UCL group remain at the forefront of defining the selection and benefits of epilepsy surgery in children and have enhanced the awareness and availability throughout Europe and more globally.” (S8).

The group meets virtually, twice a month to discuss 2-4 cases. A surgical case considered by the network was used for a video to advertise the work and success of the European Reference Networks overall, demonstrating how a boy of 5 years of age in Finland with a rare epilepsy related to a specific benign brain tumour, hypothalamic hamartoma, was brought for discussion with centres in the network and ultimately went to Marseille for specialised treatment ( S9). This film won a silver dolphin award at the Cannes film festival in 2019. The patient’s father said: “Thanks to this network, my son’s doctor was able to seek advice from the best specialists and they were able to work out the best treatment for my son.”