Mortality in adults with moderate to profound intellectual disability: a population-based study.
Adults with moderate to profound ID die years earlier, and the red flags are already in their charts.
01Research in Context
What this study did
Ruser et al. (2007) counted every death in a whole region of the U.K. over seven years. They compared adults who had moderate to profound intellectual disability with adults of the same age who did not.
The team used government death records and disability registers. No one was asked to join a study; the data already existed.
What they found
Adults with moderate to profound ID died at three times the rate of other adults. The gap was worst in the twenties age band, where death rates were 9–17 times higher.
Women with ID and adults with Down syndrome faced the sharpest risk.
How this fits with other research
McConkey et al. (2010) helps explain why. They showed people with ID are hospitalized for preventable problems six times more often than everyone else. Poor primary care, not mystery illnesses, drives the deaths.
McCarron et al. (2013) and Hermans et al. (2014) map the disease load behind the numbers. By their forties, seven in ten adults with ID already live with two or more chronic conditions. By age fifty, four in five do.
van Timmeren et al. (2016) zoom in on the most disabled slice. In residential care, each adult with severe or profound ID carries an average of twelve physical health problems at once. The mortality spike is the tip of a very visible iceberg.
Why it matters
If you serve adults with ID, treat every clinic visit like a health checkpoint. Screen for constipation, reflux, vision, epilepsy, and cardiac issues the moment they walk in. Push for timely vaccinations, cancer tests, and dental care. Your advocacy can shave years off the three-fold death gap these studies keep showing.
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02At a glance
03Original abstract
BACKGROUND: People with intellectual disability (ID) experience a variety of health inequalities compared with the general population including higher mortality rates. This is the first UK population-based study to measure the extent of excess mortality in people with ID compared with the general population. METHOD: Indirectly standardized all-cause and disease mortality ratios (SMRs) and exact Poisson confidence intervals were calculated by age and sex for all adults, aged 20 years or over, with moderate to profound ID living in Leicestershire and Rutland, UK, between 1993 and 2005. The general population of Leicestershire and Rutland, which has a population of approximately 700,000 individuals in this age range, was used for comparison. To explore differences within the study population, overall SMRs were also calculated by presence of Down syndrome and last place of residence (city or county). RESULTS: Of 2436 adults identified, 409 (17%) died during 23,000 person-years of follow-up. Both all-cause and disease-specific mortality were around three times higher than the general population but varied considerably with age. The largest differences were observed in people in their twenties, where all-cause mortality was almost nine times higher in men (SMR=883; 95% CI=560-1325) and more than 17 times higher in women (SMR=1722; 95% CI=964-2840). At a particular disadvantage were people with Down syndrome and women with ID living in the city. CONCLUSIONS: The relatively high SMRs observed in young people and in women, particularly those living in inner city areas and with Down syndrome, deserve further investigation for possible explanations, including socio-economic factors.
Journal of intellectual disability research : JIDR, 2007 · doi:10.1111/j.1365-2788.2006.00918.x