People with learning disabilities find it more difficult than other people to learn new information, problem solve, and live independently. They face a lot of disadvantages compared with other people, including dying on average between 6 and 12 years earlier. Research has found that about one out of three deaths in people with learning disabilities could have been avoided. We want to do more research to find out why they die so much earlier. We want to see how much of their early deaths can be explained by lifestyle and health problems, and how much may be due to poor quality of care. We hope to find ways to improve healthcare and life expectancy in people with learning disabilities.
We will use a general practice database (Clinical Practice Research Datalink [CPRD]) to look at everyone with learning disabilities (about 33 thousand people) and will compare them to people without learning disabilities (about 1 million people). We will compare the life expectancy of people with and without learning disabilities. We will then look at how life expectancy changes if we take account of things that might make a persons life chances worse, such as level of deprivation, health problems and obesity. We will also look at peoples experiences (pathway) of visiting their general practice surgery and hospital to see if we can see any gaps in care that might make people with learning disabilities more likely to have health problems and die. This will include looking at how often they are invited for cancer screening and whether they attend, how long they are seen in hospital, how their learning disability is recorded by hospital staff when they visit hospital, and what they die from.
Background: People with learning disabilities are known to die prematurely. However, the contribution of individual demographic, lifestyle and comorbid factors to premature mortality in this population remains unclear. Moreover, the role of service provision and healthcare received in the primary and secondary care sector has not been fully quantified.
Objectives: This study aims to: (i) explore differences in life expectancy between people with and without learning disabilities; (ii) quantify the impact and magnitude of demographic, lifestyle and comorbid factors on excess deaths in people with learning disabilities; and (iii) explore primary and secondary care pathways, and causes of death, to identify any gaps in care that might contribute to excess mortality in the learning disability population.
Design: A real-world observational study using linked primary care, hospital and mortality data of approximately 33,000 people with learning disabilities and a random comparison group (1 million) of the general population.
Methods: Flexible parametric methods will be used to calculate life expectancy in the study and comparison group. The contribution of demographic and comorbid conditions to life expectancy will be assessed using two methods: (i) multi-variable adjustment and (ii) propensity score matching. Primary and secondary care pathways and causes of death, including standardised mortality ratios, will be further examined to identify any gaps/differences in care that might contribute to excess mortality.
All-cause mortality (life expectancy)
Freya Tyrer - Chief Investigator - University of Leicester
Freya Tyrer - Corresponding Applicant - University of Leicester
Gyles Glover - Collaborator - Public Health England
Mark Rutherford - Collaborator - University of Leicester
Panos Vostanis - Collaborator - University of Leicester
HES Admitted Patient Care;ONS Death Registration Data;Patient Level Index of Multiple Deprivation