Cause-specific mortality and death certificate reporting in adults with moderate to profound intellectual disability.
Adults with moderate to profound ID die up to 85 times more often from preventable causes, yet most death certificates skip the diagnosis—proof the healthcare system still overlooks this group.
01Research in Context
What this study did
Tyrer et al. (2009) looked at every death in a group of English adults with moderate to profound intellectual disability. They compared the causes of death with national data and checked whether the death certificates listed the person’s ID.
The team pulled health records and death certificates for the whole region. They wanted to see which medical problems actually killed these adults and how often ID was written down.
What they found
Adults with ID died far more often from birth defects, epilepsy, mental-health crises, chest infections and choking. Some causes were 6 to 85 times higher than in the general public.
Only 4 out of 10 death certificates mentioned the person had an intellectual disability. This under-count hides the true size of the health gap.
How this fits with other research
Amaral et al. (2017) updated the same English picture eight years later and added life-expectancy numbers. They still found a three-fold death rate and 20-year shorter lives, showing the gap has not closed.
Lotfizadeh et al. (2020) and Heald et al. (2020) zoomed in on cancer in Swedish adults with ID. They found fewer cancer diagnoses but also fewer specialist visits and less hospital-based end-of-life care. The two sets of findings do not clash: F et al. counted all causes, while the Swedes showed cancer care itself is skimpy.
A 2019 U.S. scoping review (Anonymous 2019) argues that most health surveys simply forget people with IDD. The low ID recording on death certificates in F et al. is the exact same invisibility problem.
Why it matters
You now have hard numbers to show families, physicians and funders why routine health monitoring is critical. Build epilepsy-watch protocols, aspiration precautions, osteoporosis screens and cancer referrals into your care plans. When you support an annual health check, insist the doctor writes “intellectual disability” in the record so future clinicians see the risk profile.
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02At a glance
03Original abstract
BACKGROUND: The study of premature deaths in people with intellectual disability (ID) has become the focus of recent policy initiatives in England. This is the first UK population-based study to explore cause-specific mortality in adults with ID compared with the general population. METHODS: Cause-specific standardised mortality ratios (SMRs) and exact 95% confidence intervals were calculated by age and sex for adults with moderate to profound ID living in the unitary authorities of Leicester, Leicestershire and Rutland, UK, between 1993 and 2006. Causes of death were also studied to determine how often ID and associated conditions, such as Down syndrome, were mentioned. RESULTS: A total of 503 (17% of population) adults with ID died during the 14-year study period (30 144 person-years). Relatively high cause-specific mortality was seen for deaths caused by congenital abnormalities (SMR = 8560), diseases of the nervous system and sense organs (SMR = 1630), mental disorders (other than dementia) (SMR = 1141) and bronchopneumonia (SMR = 647). Excess deaths were also seen for diseases of the genitourinary system or digestive system, cerebrovascular disease, other respiratory infections, dementia (in men only), other circulatory system diseases (in women only) and accidental deaths (in women only). Two-fifths (n = 204; 41%) of deaths recorded in adults with ID mentioned ID or an associated condition as a contributing cause of death. CONCLUSIONS: Strategies to reduce inequalities in people with ID need to focus on decreasing mortality from potentially preventable causes, such as respiratory infections, circulatory system diseases and accidental deaths. The lack of mention of ID on death certificates highlights the importance of effective record linkage and ID reporting in health and social care settings to facilitate the government's confidential inquiry into causes of death in this population.
Journal of intellectual disability research : JIDR, 2009 · doi:10.1111/j.1365-2788.2009.01201.x