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Child Health Reviews-UK

Seizure-related deaths and serious morbidity, and sudden unexpected death in children and young people with epilepsy

Dr Peter Sidebotham from Warwick Medical School, in collaboration with the Royal College of Paediatrics and Child Health, is carrying out research as part of the Clinical Outcomes Review Programme: Child Health Research – UK.

This research has been commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of the Department of Health and healthcare administrations in Scotland, Northern Ireland, Wales, the Channel Islands and the Isle of Man.

Project Aims

The aim of this project is to conduct case reviews of seizure-related deaths and serious morbidity, and sudden unexpected deaths in children and young people aged between 1 and 17 (inclusive) with epilepsy, in order to identify and learn from any clinical, organizational, management or personal issues that may have contributed to these adverse outcomes.

This in turn aims to inform clinical practice and improve clinical services for children with epilepsy across the UK.

The project will address the following questions:

  1. What epidemiological, clinical and system-related (organizational and management) factors are associated with deaths, intensive care and high dependency care admissions in children and young people with epilepsy in the UK?
  2. To what extent are these adverse clinical outcomes associated with divergence from established best practice in clinical care for children and young people with epilepsy in the UK?
  3. To what extent do epidemiological, clinical and system-related factors differ between those children and young people with epilepsy who die and those children and young people with epilepsy receiving intensive and high dependency care as a result of prolonged seizures?
  4. What can be learnt through different approaches to reviewing cases of death or serious morbidity in children and young people with epilepsy (including child death overview panel reviews and serious untoward incident reviews)?

The project uses a mixed methods approach incorporating clinical questionnaires, and two different methods of case notes review.

Project Timescales

The research project started notifications and data collection in June 2012 and is due to report in August 2013. To date, over 300 cases have been notified to the research team, nearly 90 questionnaires completed, and over 30 detailed case notes reviews undertaken.