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Trends in the Prevalence and Complexity of Children with a Life-limiting or Life-threatening Condition in Wales

A Welsh version of the below text can be found by clicking this link:- 

Study Text in Welsh (MS Word , 20kb)

Lay summary

This study aims to estimate the number of children living with a life-limiting condition in Wales and to examine the complexity of the children’s condition. This will aid future design of services for children and their families.

Background to the research

Life-limiting conditions (LLC) are serious health conditions that may shorten children's life. In 2011 it was estimated that 3,200 children (0–19 years) in Wales lived with life-limiting conditions. As many children living with life-limiting conditions have repeated admissions to hospitals and require healthcare including palliative care for many years, it is essential to have updated data for planning these services.

What we are aiming to do?

In this study we wish to describe the current number of children with a life-limiting condition in Wales and the complexity of their conditions. To do this, we will use data already collected as part of health care from around 63,000 (3,500 per year) children, teenagers, and young adults with a life-limiting condition in Wales from 2003 to 2020.

Methods

The data we need to link together to capture all children with a life-limiting condition has already been collected as part of clinical care of these children. These data are held safely by the NHS in Wales and England and by the Paediatric Intensive Care Audit Network (PICANet) Team at the University of Leeds. We need to link together multiple information from SAIL with data from NHS digital (hospital outpatient, inpatient and emergency care data) and data from children who were cared for in an intensive care unit (available from PICANet - Paediatric Intensive Care Audit Network). To ensure that data is linked correctly, the NHS digital and PICANet teams need to securely transfer identifiable (NHS Number, postcode, date of birth, and sex) and clinical data from all Wales residents aged 0-25 years from 2003 to 2020 to SAIL team. The SAIL team will match the information to their data and identify children and young adults with life-limiting conditions. After the linking the data, SAIL team will remove identifiable data (NHS number, date of birth, etc) and will provide access for the research team to the dataset without any identifiable data. The access occurs via a remote platform, the SAIL Gateway. No data will be stored at the University of York and the research team at the University of York would not see any identifiable information on these children, teenagers or young adults.

We will use the information to provide an updated estimate of the number of children in Wales who are living with a life-limiting conditions. Also, we will use this information to describe the complexity of the condition to aid service planning and delivery.

If you would like to find out more about the study, please contact the research team at mhrc@york.ac.uk or lorna.fraser@york.ac.uk or Tel: 01904 321889 or write to the Martin House Research Centre, Department of Health Sciences, Seebohm Rowntree Building. University of York, Heslington, York, YO10 5DD, UK.

Opt out

Should you not wish your child’s data to be used for this study, please contact the NHS Digital national data opt-out on https://digital.nhs.uk/services/national-data-opt-out. Taking the National opt out route would mean opting out of ALL research not just this specific study.