University of Glasgow

Academic Institute

Gillian Smith - Chief Investigator - University of GlasgowGillian Smith - Corresponding Applicant - University of GlasgowBhautesh Jani - Collaborator - University of GlasgowCraig Meville - Collaborator - University of GlasgowIain Carey - Collaborator - St George'sUniversity of LondonJill Pell - Collaborator - University of GlasgowMichael Fleming - Collaborator - University of GlasgowSarita Soni - Collaborator - University of Glasgow

CPRD865

Children and young people with intellectual disabilities have an increased risk of death, which may be avoidable via the provision of good quality health care. Epilepsy is among the most commonly attributed causes of death in children and young people with intellectual disabilities. However, many clinicians and researchers argue the increase in the risk of death in children and young people with both epilepsy and intellectual disabilities is driven by non-epilepsy-related causes, such as respiratory disorders. This project will look at the risk of death among children and young people aged 0-24 who have epilepsy, with the aim of comparing epilepsy patients with versus without co-existing intellectual disabilities. The study will also include children and young people with intellectual disabilities without epilepsy, and compare all three groups to a control group of children and young people in the general population. We will also look and see whether there are differences in the risk of epilepsy-related deaths between these first two groups. This information will be used in clinical guidelines and be used by services to reduce the risk of death in children and young people with intellectual disabilities.

Children and young people with intellectual disabilities have a standardised mortality ratio of 11.6. Epilepsy is among the most common contributing causes of death in children and young people with intellectual disabilities. Available evidence suggests that around 90% of epilepsy deaths occurs in children and young people who have co-existing intellectual disabilities. However, the quality of the studies reporting this high proportion of overall deaths in children and young people with epilepsy lacks rigour to inform policy and service developments. This study will use systematic methods to identify a large cohort of children and young people with epilepsy and a large cohort of children and young people with intellectual disabilities. A representative control group of children and young people in the general population will also be included.

26/01/2021

Release