Moderating effects of intellectual disabilities on mortality among people with autism: a retrospective cohort study of a national sample of primary-care patients in England using the Clinical Practice Research Datalink

Study type
Protocol
Date of Approval
Study reference ID
20_000154
Lay Summary

Previous studies have shown that people with autism are more likely to die prematurely than people without autism. Autistic people are also more likely to have intellectual disabilities than people without autism. It is still unclear whether these co-occurring intellectual disabilities increase the risk of premature death in people with autism. Previous studies often included a small number of patients or used older data, thus are unlikely to reflect current autism prevalence and mortality rates. To date, there have been no UK studies, which would have investigated mortality or the effect of co-occurring intellectual disabilities on mortality in the population with autism. In this study, we will investigate the number and causes of deaths in people with and without autism over time. We will also examine the effect of intellectual disabilities on the rate of mortality in people with autism. The results of this study will help us understand whether people with autism are more likely to die prematurely and whether their causes of death differ from those recorded for people without autism.

Technical Summary

Risk of premature mortality has been reported to be elevated among individuals with autism, compared with the general population and healthy cousin or sibling controls, but evidence on all-cause and cause-specific mortality amongst the population with autism in the UK is still lacking. People with autism are more likely to have co-occurring intellectual disabilities, but large-scale epidemiological studies investigating intellectual disabilities as a moderator of mortality in this population are also scarce. To date, only two studies have analysed the differences in mortality between individuals with autism with and without co-occurring intellectual disabilities and reported inconsistent findings. In most previous studies, sample sizes have been too small to compare mortality in individuals with autism with and without co-occurring intellectual disabilities reliably, so the potentially moderating effect of intellectual disabilities on mortality and causes of death in autism remains understudied. The aim of this project will be to investigate all-cause and cause-specific mortality in a nationwide sample of primary care patients with and without autism and examine if co-occurring intellectual disabilities increase the risk of death in patients with autism.

Health Outcomes to be Measured

All-cause and cause-specific mortality

Collaborators

Ewelina Rydzewska - Chief Investigator - University of Glasgow
Ewelina Rydzewska - Corresponding Applicant - University of Glasgow
Andrew Stanfield - Collaborator - University of Edinburgh
Bhautesh Jani - Collaborator - University of Glasgow
Claire Moir - Collaborator - NHS Scotland
Craig Meville - Collaborator - University of Glasgow
Deborah Kinnear - Collaborator - University of Glasgow
Dewy Nijhof - Collaborator - University of Glasgow
Iain Carey - Collaborator - St George's, University of London
James Cusack - Collaborator - Autistica
Jill Pell - Collaborator - University of Glasgow
Michael Fleming - Collaborator - University of Glasgow
Sarah Cassidy - Collaborator - University of Nottingham

Linkages

ONS Death Registration Data;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation