Mortality of people with intellectual disability in northern Sydney

On the need for a specialist service within the generic hospital setting for the adult patient with intellectual disability and physical health problems

“…Their additional finding from a specialist ID service that about half the medical problems of patients with ID had not previously been diagnosed by generic (mainly GP) systems suggests that healthcare by both GPs and generic hospital services was incomplete. In a later survey on mortality among the same population group (Durvasula et al, 2002), the overall standard mortality ratio was found to be 4.9; moreover in a follow-up study (Durvasula et al, 2004), the number of hospital admissions among those whose death was deemed to have been avoidable was greater than among a control group with ID who did not die.…”

“…Results from Australian and American research (Durvasula, Beange, & Baker, 2002;Durvasula, Beange, Baker, & Bell, 2004;Kastner, Nathanson, & Friedman, 1993;New South Wales Ombudsman, 2004;O'Hara, 2006;Scheepers et al, 2005;Wallace, 2001) suggest that the failure to address these barriers has contributed to avoidable deaths and missed diagnoses of patients with ID seeking healthcare in generic systems of primary and tertiary care. In Durvasula and colleagues' (2002) study conducted within generic hospital services, up to 28% of deaths of adults with ID were deemed to be preventable.…”

People with an intellectual disability in the discourse of chronic and complex conditions: an invisible group?

“…Alternatively, people with mild intellectual disabilities were more likely to experience the same life expectancy as other members of society without disabilities, with respiratory disease as the main cause of death. Durvasula et al 31 recognised the need for closer supervision or earlier medical attention to prevent adverse outcomes. Risk factors for premature death include immobility, tube feeding, incontinence and epilepsy.…”

“…One of the few studies in Australia by Durvasula et al 31 looked at 693 people with intellectual disability in the lower North Shore of Sydney from 1989 to 1999 identifying the causes and risk factors for death and avoidable conditions. Their study found that 44.7 percent of the people who died had severe to profound intellectual disabilities, were more inclined to have severe and complex medical disorders and required a great deal of support with core areas such as eating, mobility and incontinence.…”

People with intellectual disabilities

“…Although their life expectancy is increasing, it remains much lower than for the rest of the population 2 – 5. The standardised mortality ratio has been found to be 8.4 for people with severe intellectual disabilities in United States and 4.9 for people with intellectual disabilities of all levels in Australia 4 5.…”