摘要：Objectives. To describe mortality among adults with intellectual disability in England in comparison with the general population. Methods. We conducted a cohort study from 2009 to 2013 using data from 343 general practices. Adults with intellectual disability (n = 16 666; 656 deaths) were compared with age-, gender-, and practice-matched controls (n = 113 562; 1358 deaths). Results. Adults with intellectual disability had higher mortality rates than controls (hazard ratio [HR] = 3.6; 95% confidence interval [CI] = 3.3, 3.9). This risk remained high after adjustment for comorbidity, smoking, and deprivation (HR = 3.1; 95% CI = 2.7, 3.4); it was even higher among adults with intellectual disability and Down syndrome or epilepsy. A total of 37.0% of all deaths among adults with intellectual disability were classified as being amenable to health care intervention, compared with 22.5% in the general population (HR = 5.9; 95% CI = 5.1, 6.8). Conclusions. Mortality among adults with intellectual disability is markedly elevated in comparison with the general population, with more than a third of deaths potentially amenable to health care interventions. This mortality disparity suggests the need to improve access to, and quality of, health care among people with intellectual disability. People with intellectual disability experience poorer physical health and receive poorer quality health care than people without intellectual disability for a range of reasons, including discrimination. 1 These inequalities are a concern for health care systems in the United Kingdom, the United States, and other developed countries, where the prevalence of intellectual disability has been estimated at approximately 1%. 2 Studies have reported that people with intellectual disability experience high mortality rates, shorter life expectancies, and excess premature mortality, with variable estimates of increased risk of death ranging between 3 and 18 times higher than those of the general population. 3–6 A national confidential inquiry into premature deaths among people with intellectual disability in the United Kingdom highlighted the potential to prevent premature mortality, 7 concluding that people with intellectual disability die on average 16 years earlier than the general population and that potentially modifiable poor care and service provision contributes to this mortality gap. The lack of reliable information on the health experience of people with intellectual disability has been identified as an important barrier to developing effective health care strategies for this group. 8 According to the US Public Health Service, it has been unable to report on the health status of individuals with intellectual disability, one of its most vulnerable populations, on a truly representational basis. 9 In other populations, an understanding of mortality patterns, especially cause-specific and potentially avoidable mortality, has been a driver in developing priorities for health care interventions and monitoring the effectiveness of health services. Unfortunately, as a result of incomplete recording of intellectual disability on death certificates and difficulties in relating death certificate data to a particular population at risk, studies based on death certification data alone are inadequate for understanding the mortality experience of people with intellectual disability. 10 Other studies are often based on local registers and may not be representative, 3 or they may be based on smaller samples with long follow-ups and may therefore no longer be contemporary. 5 Linkages between data sources that record mortality and those that identify people with intellectual disability have the potential to yield accurate evidence on health and mortality disparities. 8 We used a large English primary care database, linked to death certification data, to describe mortality rates between 2009 and 2013 in a group of adults with intellectual disability and to compare these rates with those found in the general population. We assessed all-cause mortality, cause-specific mortality, and mortality considered potentially avoidable through medical intervention.
