About the programme - CHR-UK

Clinical Outcome Review Programme: Child Health Reviews-UK was a UK-wide programme of work, systematically examining mortality and morbidity in children and young people between their 1st and 18th birthdays.

Update

Findings from the CHR-UK programme were launched in September 2013. Reports are available for both projects, including a summary version of the themed case review for parents and carers.

Go to reports

Aim

The programme aimed to inform clinical practice and improve the healthcare provided to children and young people in England, Scotland, Wales, Northern Ireland, the Channel Islands and the Isle of Man, through two discrete projects. 

Retrospective epidemiological review of all-cause mortality

At the time of the study, the only national overview of underlying condition and causes of death in children was based on information recorded on death certificates and published by the Office for National Statistics (ONS). These data did not provide clinicians and policy makers with a clear overview of the types of children most likely to die, or an understanding of how mortality rates for different groups of children were changing over time.

The project linked ONS death certificate data with longitudinal hospital admissions information in order to establish a new category of underlying conditions for children who die. This anonymised linked dataset provided more accurate and clinically relevant classifications of causes of death, in order to answer the following questions:

  • What are the characteristics of children who die?
  • How are these characteristics changing over time?

The project was an all-cause analysis of mortality; however, the findings of this project were anticipated to be instrumental in identifying themes for future case reviews.

The project was led by Professor Ruth Gilbert, Professor of Clinical Epidemiology, Medical Research Council Centre for Epidemiology for Child Health, Institute of Child Health, University College London.

Themed case review of mortality and morbidity

The Child Health Reviews-UK case review project was a themed review of cases of mortality and morbidity in children and young people with epilepsy, at all stages of the care pathway, including primary and emergency care.

Epilepsy is the most common chronic childhood neurological condition and is associated with serious morbidity and mortality. Approximately one in 200 children in the UK has a form of epilepsy and between 40 and 80 children die as a result of their epilepsy every year. There is a significant burden of care, associated with epilepsy, with five percent of emergency department and outpatient paediatric attendances being seizure-related.

Epilepsy-related deaths result from a range of direct causes including seizures themselves, which can lead to fatal accidental or aspiration-related events, and sudden unexpected death in epilepsy. Effective clinical management and emergency treatment are necessary to reduce the risk of serious morbidity resulting from epilepsy, which can include cognitive impairment and reduced educational potential.

In the years preceding the study, there was a renewed focus on improving care for people with epilepsy, partly in response to high-profile cases of mortality, with efforts being made to address geographical variation in service provision, high rates of misdiagnosis and mismanagement. However, in spite of this, the clinical care received by children and young people with epilepsy who have died had not been reviewed since the 2002 National Sentinel Clinical Audit of Epilepsy-Related Death, which found that 59 per cent of child deaths were potentially or probably avoidable.     

For these reasons, a review of mortality and morbidity in children and young people with epilepsy was thought to make a valuable contribution to the evidence base in this area, with report recommendations having the potential to improve clinical practice.

The review augmented previous confidential enquiry methodology by incorporating quantitative clinical questionnaire data, in addition to criterion-based and holistic case note assessment.

The themed review of cases of mortality and morbidity in children and young people with epilepsy, covered all stages of the care pathway including primary and emergency care. The review contributed to the evidence base in this area, benefitting from close alignment with the national Epilepsy12 audit managed by the RCPCH and led by Dr Colin Dunkley. It has considerable potential to improve clinical practice.

The review incorporated quantitative and qualitative methodologies and was based around the new electronic portal developed by the RCPCH.

The project was managed by staff at the RCPCH. The clinical lead was Dr Peter Sidebotham, Consultant Paediatrian and Associate Professor of Child Health at the University of Warwick.

Information for patients, parents and carers

We informed patients and their families why this programme was needed, and how we used the information collected.

Find out more

Working with

Child Health Review-UK is the child health component of the Clinical Outcome Review Programme commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of the Department of Health, England, DHSSPS Northern Ireland, NHS Scotland and NHS Wales, the Channel Islands and the Isle of Man.

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