Why do people with intellectual disability have lower life expectancy?

The life expectancy statistics for people with intellectual disability, compared to people without, make for stark reading: they are, for example, eight times more likely to die from cancer in a 10-year period.
 
This is one of the many findings of a study by researchers from the University of New South Wales, recently published in the Journal of applied research in intellectual disabilities.
 
The study involved the examination of the data of more than 42,000 people with intellectual disability who received disability services in NSW between 2005–15. But the researchers were interested in more than just the numbers – they also wanted to look into the reasons behind them, and whether anything can be done to make a difference.
 
‘The statistics alone aren’t telling us the full story,’ Professor Julian Trollor, senior author and director of UNSW’s Department of Developmental Disability Neuropsychiatry, said.
 
‘The reality is that people with intellectual disability face major barriers to receiving appropriate and effective healthcare.’
 
One of those barriers is a lack of information about screening and detection in formats accessible to people with intellectual disability.
 
‘Communication difficulties and a lack of health literacy can present a barrier to receiving healthcare for some people with [intellectual disability[,’ Dr Simone Reppermund, a lead author of the study and Scientia Fellow in the UNSW’s Department of Developmental Disability Neuropsychiatry, said.
 
Another barrier is a lack of focus or understanding among practitioners regarding the consequences of comorbidities in, for example, the case of people with mental illness and intellectual disability who may be taking medications that can result in weight gain and a less active lifestyle.
 
‘We think the higher mortality rates reflect the poor health care associated with having the compounding effect of mental illness on top of intellectual disability, so we argue for a strategy for cardiometabolic monitoring as well as lifestyle interventions,’ Professor Trollor said.
 
Discriminatory attitudes were also found to impact on treatment, often leading to inadequate or delayed care.
 
‘Many services and professionals are not equipped with the right knowledge and attitudes and may not understand the practical ways of working with people with intellectual disability, and this can prevent them getting the treatments they need,’ Professor Trollor said.
 
Researchers also found people with epilepsy, cerebral palsy and Down syndrome had increased mortality risk that could be better managed by adherence to disability-relevant management plans, improved training for carers within the disability sector, and a more proactive approach to preventive healthcare.
 
With regards to preventive healthcare, there were further systemic barriers to treatment for people with intellectual disability.
 
Dr Preeyaporn Srasuebkul, also from the UNSW’s Department of Developmental Disability Neuropsychiatry, highlighted inadequate support provided to GPs to work effectively with patients with intellectual disability.
 
‘Adjustments to practice and additional time are required to allow GPs to do a good job in preventive healthcare, including to perform routine health checks,’ she said.

‘Better funding within the Medicare Benefits Schedule and health policy that includes the needs of people with intellectual disability would be important components that could improve long-term health outlook.’
 
Jim Simpson, senior advocate for the NSW Council for Intellectual Disability, is hopeful the new research can help inform Federal Government policy and improve outcomes for people with intellectual disability.
 
‘It is appalling that cancer is increasing the rate of death for people with intellectual disability by eight times and that people with mental health problems and other disabilities are dying too young,’ he said.
 
‘This research will be a valuable informant of the National Roadmap for Improving the Health of Australians with Intellectual Disability that is being developed by the Federal Government.’

Intellectual disability Medical research Mortality rates Preventive healthcare