Mortality of people with learning disability

Date of ISAC Approval: 
12/08/2015
Lay Summary: 
People with learning disabilities have poorer health and die younger than other people. A Confidential Inquiry was set up to look into these early and potentially avoidable deaths to provide evidence on how big the problem is and how to prevent it. The Inquiry showed that there was little evidence available, because UK-wide information on who has a learning disability was not routinely linked with information on when and why they die. This research will use the routinely linked information that is available to provide evidence about the likely levels and patterns of early deaths of people with learning disabilities as well as "near misses" when people with learning disabilities have gone to hospital in an emergency. This will help the government develop standard ways to measure how well doctors are doing at preventing early deaths and to monitor any changes over time.
Technical Summary: 
This study will use CPRD linked primary care, death certificate and inpatient hospital data to develop indicative statistics about likely levels and patterns of excess mortality identifiable, "near miss" emergency hospitalisations, and the extent of hospital inpatient care, for people recorded as having learning disabilities in their GP records and a control population who do not between April 2010 and March 2014. Aggregate data will be provided by CPRD to PHE for the purposes of calculating standard mortality rates (all-cause and cause-specific), life expectancy, and person years of life lost to amenable causes. Additionally, rates of emergency hospitalisations for potentially fatal conditions particularly prominent in people with learning disabilities will be calculated. The duration of hospitalisations will also be calculated.
Health Outcomes to be Measured: 
All-cause and underlying cause specific mortality Deaths due to defined amenable causes Deaths due to the observed most frequent causes of death amongst people with learning disability Emergency hospitalisations due to defined Ambulatory Case Sensitive causes Duration of defined emergency hospitalisations Hospitalisations by admission method and main speciality grouping and duration
Collaborators: 

Gyles Glover - Chief Investigator - Public Health England
Ms Jessie Oyinlola - Collaborator - CPRD
Pauline Heslop - Collaborator - University of Bristol
Dr Rachael Williams - Researcher - CPRD

Linkages: 
HES Admitted;ONS