The Royal College of Paediatrics and Child Health review, led by Professor Ruth Gilbert, Professor of Clinical Epidemiology at the Institute of Child Health, UCL, will be the most comprehensive of its kind.
With child mortality in the UK amongst the highest in Europe and limited current data on the causes of death, the national clinical outcome review programme - Child Health Reviews-UK - led by the Royal College of Paediatrics and Child Health will provide new insights into the conditions with which children die. It is hoped that the information will lead to improved outcomes for children and young people in the future.
The two-year programme, funded by the Healthcare Quality Improvement Partnership, will cover two key areas: a retrospective review, looking at the characteristics of children who have died, and a themed case review focusing on mortality and morbidity in children and young people with epilepsy.
Currently, the only comprehensive national overview of underlying conditions and causes of death in children is based on death certificates, which provide limited ancillary information. Data on co-morbidities, patterns of previous hospital admissions and whether children with terminal illnesses are enabled to die at home are lacking. The Royal College of Paediatrics and Child Health review, led by Professor Ruth Gilbert, Professor of Clinical Epidemiology at the Institute of Child Health, UCL, will be the most comprehensive of its kind and will:
- link the information on children’s hospital admission records across years and to death certificates
- reclassify causes of death using information from death certificates and from the diagnostic codes recorded for hospital admissions immediately preceding death
- categorise underlying chronic conditions, based on the child’s entire hospital care record
- seek to answer the questions:
- what are the characteristics of children who die?
- how are these characteristics changing over time?
Themed review on epilepsy
Around 1 in 200 children in the UK has a form of epilepsy and each year between approximately 40 and 80 children die as a result. The last national review of clinical care received by children and young people with epilepsy who have died took place in 2002 and found that 59% of child deaths were potentially avoidable.
The College’s themed review on epilepsy, led by Dr Peter Sidebotham, Associate Professor of Child Health at Warwick Medical School, will involve case reviews of children and young people with epilepsy who die or suffer severe morbidity. The review will extend across the entire care pathway including primary and emergency care.
The Royal College of Paediatrics and Child Health will work with clinicians, parents and young people. The aim is to identify best practice and share lessons.
Professor Neena Modi, Vice-President for Science and Research at the Royal College of Paediatrics and Child Health led the application for this programme that was awarded after a competitive tendering process, and is Chair of the programme steering board. She said:
"Child Health Reviews-UK is groundbreaking and could help improve healthcare and outcomes for children and young people with epilepsy.
"We are employing rigorous methodology and our analysis will be comprehensive and robust, both in our investigations of the conditions with which children die and in the specific "themed" review relating to epilepsy.
'We will draw on a wide range of expertise; we are determined to highlight best practice in the care of this patient group, identify avoidable factors and share the lessons that emerge."