Rates, causes and predictors of all-cause and avoidable mortality in 514 878 adults with and without intellectual disabilities in Scotland: a record linkage national cohort study

Background Studies on avoidable mortality in adults with intellectual disabilities are limited, as are studies on causes of death.Objectives We aimed to quantify mortality rates, and causes, and identify factors (i.e., age, sex, Scottish Index of Multiple Deprivation (SIMD)) related to avoidable mortality in adults with intellectual disabilities.Design A record linkage national cohort study.Setting A cohort of adults with intellectual disabilities with or without co-occurring autism, aged 25+ years and a randomly selected comparison group aged 25+ years without intellectual disabilities or autism identified from Scotland's Census, 2011. Census records were linked to the National Records of Scotland Statutory Register of Deaths database to ascertain all deaths from 2011 to 2019.Participants We analysed data on 14 477 adults with intellectual disabilities aged 25+ years and a randomly selected comparison group of 506 207 adults aged 25+ without intellectual disabilities identified from Scotland's Census 2011.Primary and secondary outcome measures We ran chi 2 tests and t-tests to investigate individual characteristics and differences in age at death for adults with intellectual disabilities compared with peers in the general population. Cox proportional hazard models were fitted to calculate risk of mortality (all-cause, avoidable, treatable, preventable) unadjusted and adjusted for age, sex and SIMD. We then calculated mortality rates, using crude and indirect standardisation methods.Results During the 8.5-year follow-up, 23.7% (crude death rate of 3033.3 per 100 000) of adults with intellectual disabilities died compared with 13.8% of controls. The median age at death among adults aged 25+ with intellectual disabilities was 65.0 years compared with 80.0 years for adults without intellectual disabilities. For all-cause mortality, the age-standardised mortality ratio (SMR) in the population with intellectual disabilities was 3.1 (95% CI 3.0 to 3.2). The SMRs were higher for the youngest age groups, women and in the most affluent areas. This was also the case for SMRs for avoidable, treatable and preventable deaths. For the population of adults with intellectual disabilities, 31.7% of recorded deaths were considered avoidable, 21.1% were treatable and 19.9% were preventable. In the controls, 18.2% of deaths were considered avoidable, 8.8% treatable and 14.7% preventable. Down syndrome and dementia were the two most commonly recorded underlying causes of death for people with intellectual disabilities while malignant neoplasm of bronchus and lung and acute myocardial infarction were most commonly recorded in the general population.Conclusions Risk of all-cause, avoidable, treatable and preventable mortality was higher for adults with intellectual disabilities than their peers. The highest SMRs were observed for youngest adults, women and individuals living in the most affluent areas.