Objectives To investigate mortality and its causes in adults over the age of 20 years with intellectual disability (ID).
Design, setting and participants Retrospective population-based standardised mortality of the ID and Comparison cohorts. The ID cohort comprised 42 204 individuals who registered for disability services with ID as a primary or secondary diagnosis from 2005 to 2011 in New South Wales (NSW). The Comparison cohort was obtained from published deaths in NSW from the Australian Bureau of Statistics (ABS) from 2005 to 2011.
Main outcome measures We measured and compared Age Standardised Mortality Rate (ASMR), Comparative Mortality Figure (CMF), years of productive life lost (YPLL) and proportion of deaths with potentially avoidable causes in an ID cohort with an NSW general population cohort.
Results There were 19 362 adults in the ID cohort which experienced 732 (4%) deaths at a median age of 54 years. Age Standardised Mortality Rates increased with age for both cohorts. Overall comparative mortality figure was 1.3, but was substantially higher for the 20–44 (4.0) and 45–64 (2.3) age groups. YPLL was 137/1000 people in the ID cohort and 49 in the comparison cohort. Cause of death in ID cohort was dominated by respiratory, circulatory, neoplasm and nervous system. After recoding deaths previously attributed to the aetiology of the disability, 38% of deaths in the ID cohort and 17% in the comparison cohort were potentially avoidable.
Conclusions Adults with ID experience premature mortality and over-representation of potentially avoidable deaths. A national system of reporting of deaths in adults with ID is required. Inclusion in health policy and services development and in health promotion programmes is urgently required to address premature deaths and health inequalities for adults with ID.
- Intellectual disability
- Cause of death
- Record linkage
- Cohort studies
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Contributors JT was responsible for the final draft. PS was responsible for analysis and contributed to the writing of the final draft. HX and SH contributed to the initial design of the manuscript and everyone contributed to the final writing of the paper and checked for important intellectual content.
Funding This research received funding from the NSW Department of Family & Community Services, Ageing, Disability & Home Care (ADHC) and the Mental Health & Drug & Alcohol Office, NSW Ministry of Health. This work is also supported by a National Health and Medical Research Council Partnerships for Better Health Project Grant; grant number APP 1056128. Details of the Partnership Project and team can be found at https://3dn.unsw.edu.au/project/national-health-medical-research-council-partnerships-better-health-project-improving-mental
Competing interests None declared.
Ethics approval NSW Population and Health Services Research Ethics Committee.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No additional data are available.
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