Reducing epilepsy diagnostic and treatment gaps: Standardized paediatric epilepsy training courses for health care professionals.

Aim: To evaluate improvement in knowledge and clinical behaviour among healthcare professionals after attendance at paediatric epilepsy training (PET) courses.

Method: Since 2005, 1-day PET courses have taught evidence-based paediatric epilepsy management to doctors and nurses in low-, middle-, and high-income countries. A cohort study was performed of 7528 participants attending 252 1-day PET courses between 2005 and 2020 in 17 low-, middle-, and high-income countries, and which gathered data from participants immediately after the course and then 6 months later.

Epilepsy deaths in children: Improvements driven by data and surveillance in pediatrics.

Epilepsy-related death in children and young people deserves understanding and intervention along with epilepsy-related deaths in adults. Risk of death from epilepsy varies at different ages, and the specific calculations of risk remains complex and varies between studies. There have been several UK studies examining factors associated with epilepsy-related deaths.

Association of quality of paediatric epilepsy care with mortality and unplanned hospital admissions among children and young people with epilepsy in England: a national longitudinal data linkage study.

Background: Concerns have been raised about variation in care quality and outcomes among children and young people with epilepsies in England. We aimed to investigate the association between quality of paediatric care, hospital admissions, and all-cause deaths among epilepsy patients.

Methods: In this longitudinal data linkage study of paediatric epilepsy services in England, we linked unit-level data from round 1 (2009-11) and round 2 (2013-14) of the Epilepsy12 national clinical audit, with death registrations from the UK Office for National Statistics and data for unplanned hospital admissions from Hospital Episode Statistics.

Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus.

Objective: Establishing a core set of outcomes to be evaluated and reported in intervention trials aims to improve the usefulness of health research. There is no established core outcome set (COS) for childhood epilepsies. The aim of this study was to select a COS to be used in evaluative research of interventions for children with rolandic epilepsy (RE).

Evaluation of a questionnaire to measure parent/carer and child/young person experience of NHS epilepsy services.

Purpose: To validate a patient-reported-experience-measure, PREM, of the NHS paediatric epilepsy service.

Methods: Section 1 of the PREM recorded demographic and clinical characteristics, and Section 2 collected information about the users' experience with the service. Section 2 included eighteen statements around three constructs: communication and provision of information to service users, interpersonal skills of staff, and clinic visits and accessibility to the services.

A UK survey of the experience of service provision for children and young people with epilepsy.

Purpose: To survey patient and carer experience for children and young people with epilepsy across the United Kingdom.

Methods: We used a Patient Reported Experience Measure methodology to explore perceived satisfaction with their epilepsy service. A survey collected anonymised proxy data on demography and illness severity, and perceptions of interaction with clinicians, ease of access to the service and the quality and quantity of epilepsy information provided.

Core Health Outcomes In Childhood Epilepsy (CHOICE): protocol for the selection of a core outcome set.

Background: There is increasing recognition that establishing a core set of outcomes to be evaluated and reported in trials of interventions for particular conditions will improve the usefulness of health research. There is no established core outcome set for childhood epilepsy. The aim of this work is to select a core outcome set to be used in evaluative research of interventions for children with rolandic epilepsy, as an exemplar of common childhood epilepsy syndromes.

Integrated care for childhood epilepsy: ongoing challenges and lessons for other long-term conditions.

Epilepsy care has been identified as a major global issue-and there are many recognised concerns in the UK for children and young people with the condition. A proposed new model could help to increase multisector integration, facilitate better outcomes and offer lessons for improving care of other long-term conditions.

Guidelines and Quality Standards in the Care of Children with Epilepsy.

To provide quality care for children with epilepsy there is a continuing need to synthesize clinical research into forms that reflect best clinical practice. The design of evidence-based guidelines allows the gathering of this information together. This review discusses the components needed to analyze published data and produce recommendations for clinical management.

The current state of epilepsy guidelines: A systematic review.

Objective: The International League Against Epilepsy (ILAE) Epilepsy Guidelines Task Force, composed of 14 international members, was established in 2011 to identify, using systematic review methodology, international epilepsy clinical care guidelines, assess their quality, and determine gaps in areas of need of development.

Methods: A systematic review of the literature (1985-2014) was performed in six electronic databases (e.g.

Developing clinical practice guidelines for epilepsy: A report from the ILAE Epilepsy Guidelines Working Group.

Clinical practice guidelines (CPGs) contain evidence-based recommendations to guide clinical care, policy development, and quality of care improvement. A recent systematic review of epilepsy guidelines identified considerable variability in the quality of available guidelines. Although excellent frameworks for CPG development exist, processes are not followed uniformly internationally, and resources to develop CPGs may be limited in certain settings.

Deaths in children with epilepsies: a UK-wide study.

Purpose: This UK-wide review of deaths in children with epilepsies was undertaken to ascertain any demographic, clinical, organisational, or management factors associated with the deaths, and to determine the extent to which any of these may have deviated from nationally agreed best practice.

Method: Paediatricians across the UK were asked to notify any deaths in children with epilepsies over a 10-month period. Hospital and community case notes were reviewed by pairs of case assessors using a structured assessment tool combining holistic and criterion-based approaches.

A review of the quality of care following prolonged seizures in 1-18 year olds with epilepsies.

Purpose: To review the quality of care of children and young people with epilepsies who, following a prolonged seizure, received high-dependency or intensive care. To identify and learn from clinical, organisational, management or personal issues that contributed to these admissions, in order to inform practice and improve clinical services for children across the UK.

Method: Notifications were collected from consultant paediatricians in England, Wales, Scotland and Northern Ireland over a 10-month period.

Antiepileptic drug treatment of rolandic epilepsy and Panayiotopoulos syndrome: clinical practice survey and clinical trial feasibility.

Background: The evidence base for management of childhood epilepsy is poor, especially for the most common specific syndromes such as rolandic epilepsy (RE) and Panayiotopoulos syndrome (PS). Considerable international variation in management and controversy about non-treatment indicate the need for high quality randomised controlled trials (RCT). The aim of this study is, therefore, to describe current UK practice and explore the feasibility of different RCT designs for RE and PS.

Guidelines, training, audit, and quality standards in children's epilepsy services: closing the loop.

There has been considerable evolution in epilepsy healthcare for children over the last decade in the United Kingdom. There has been no single explanation for this. The development of national clinical guidelines, locally delivered but nationally designed educational programmes, nation-wide clinical audit, clinical networks and development of designated services have all had complimentary roles in enabling the implementation of national recommendations for the development of epilepsy care.

A pilot of clinical performance indicators for suspected childhood epilepsies.

Purpose: In response to continuing concerns regarding the quality and equality of care for children and young people, the British Paediatric Neurology Association (BPNA) has supported the development of practical and meaningful audit to support quality improvement.

Method: In 2006, the Children's Epilepsy Workstream in Trent (CEWT) coordinated a retrospective multi-service audit of paediatric epilepsy care against NICE and SIGN guidelines. This aimed to both facilitate quality improvements for participating services and act as a pilot for future potential national audits.

Evolution of the EEG in children with Rasmussen's syndrome.

Purpose: The early diagnosis of Rasmussen's syndrome (RS) is often difficult, with differentiation between RS and focal cortical dysplasia (FCD) at epilepsy onset problematic. This study reviewed electroencephalography (EEG) in the two conditions for early indicators of either pathology.

Methods: All children with either suspected RS or with unilateral FCD undergoing evaluation for epilepsy surgery between 1992 and 2005 were identified.

Acute scoliosis in a 3-year-old boy.

The case describes the presentation of a fit and well 3-year-old boy to the emergency department of a district general hospital after he developed an acute scoliosis overnight. There was no history of trauma, his observations were normal and he had non-specific symptoms of lethargy and reduced appetite, but no fevers or respiratory distress. Bloods showed raised inflammatory markers and he was referred to orthopaedics as a septic disc as there was some spinal tenderness.

A population audit of first clinic attendance with suspected epilepsy.

Objective: To assess the quality of clinical care at first clinic attendance in children with suspected epilepsy from a defined geographical population.

Method: All hospital- and community-based consultant paediatricians in Nottingham City region, UK, were asked to collaborate with a retrospective clinical audit identifying children seen between January 2001 and March 2002. The British Paediatric Neurology Association (BPNA) audit tool (Appleton R, Besag F, Kennedy C, et al.