Mortality among a Cohort of Persons with an Intellectual Disability in New South Wales, Australia

Abstract

Our findings indicate excess mortality of people with an intellectual disability when compared to the general population. They also indicate that females with an intellectual disability have a higher relative mortality compared to female same-aged general population peers, and also males with an intellectual disability, a finding replicated in other similar cohort studies. For international comparison using the WHO standard population, our intellectual disability cohort (ages 5-69 years) had a mortality of 4.04 deaths per 1000.

An evaluation of the effectiveness of annual health checks and quality of health care for adults with intellectual disability: an observational study using a primary care database

“…122 Regardless of these methodological differences, the gender relationship between ID and mortality is complex and warrants further investigation. 123 We found an elevated risk of mortality in adults with Down syndrome, which was approximately three times higher than that in adults with ID without Down syndrome. Mortality in people with Down syndrome has been widely studied.…”

“…However, simply comparing overall mortality rates could hide any potential gender disparity, as men of a similar age in the general population may have a higher underlying mortality rate than women from being more likely to engage in higher-risk lifestyles or behaviours, a difference that may not exist within the population with ID. 124 Therefore, although more deaths are observed among adult men with ID in many studies, 82,122,123,125 when the authors' analyses compare observed mortality with expected deaths in their control populations, using SMRs, they observe much higher expected mortality for women with ID. For example, in the New South Wales study, 123 the authors reported a SMR of 4.26 for women versus a SMR of 2.52 for men, whereas the Leicestershire study 122 produced a similarly higher SMR for women (3.24) compared with men (2.28).…”

“…124 Therefore, although more deaths are observed among adult men with ID in many studies, 82,122,123,125 when the authors' analyses compare observed mortality with expected deaths in their control populations, using SMRs, they observe much higher expected mortality for women with ID. For example, in the New South Wales study, 123 the authors reported a SMR of 4.26 for women versus a SMR of 2.52 for men, whereas the Leicestershire study 122 produced a similarly higher SMR for women (3.24) compared with men (2.28). A comparable gender disparity was also seen for SMRs in all ages in a recent study in Ireland 126 using national databases of people with ID and census data.…”

“…122 This was slightly lower than our age-and gender-adjusted HR of 3.62, which may be attributable to regional as well as period and other methodological differences. Internationally, a recent large retrospective longitudinal study 123 in New South Wales, Australia, used linked health data for 817 deaths among people with ID aged 5-69 years to produce a SMR of 3.15. Gender differences that may have an impact on mortality within the population with ID are not well understood.…”

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

“…There is good evidence from various sources that the rate of all-cause mortality is higher in individuals with ID, 63,279,282 particularly due to excess deaths from respiratory disorders, neurological diseases, congenital abnormalities and accidents. Standardised mortality ratios (SMRs) of 2.28 (95% CI 2.02 to 2.56) for men with ID and 3.24 (95% CI 2.83 to 3.69) for women with ID, compared with the general population, reported in a 14-year study of individuals from the Leicester area 279 were applied to the other-cause mortality rates that were derived from the ONS data.…”