A study has revealed children and young people with learning disabilities are 11 times more likely to die prematurely than their neurotypical peers.
The Scottish Learning Disabilities Observatory (SLDO), based at the University of Glasgow’s School of Health and Wellbeing, compared the country’s 2011 census data to death registrations, to look at all deaths in people aged between five and 24 years, between 2011 and 2020.
The large-scale study compared data for 7,247 children with learning disabilities with that of 156,439 children without such conditions.
It found that in general, people with intellectual disabilities were more likely to die 20 years earlier than the general population.
Those aged between five and 14 years of age were up to 11 times more likely to die prematurely.
Premature deaths which could have been avoided through prevention or good health care were also more common – with 34% of deaths among children and young people deemed “avoidable”.
A further 23% were deemed treatable – caused by developed diseases which could be treated with good healthcare – like epilepsy, pneumonia, respiratory infections or lung injuries.
Finally, 13% were considered preventable through incidence reductions if members of the public had intervened to help, like in accidents, choking, etc.
The research found that children and young people with intellectual disabilities are more likely to experience physical and mental ill health than their neurotypical peers.
The study said: “The results of this study indicate improvements in the care and treatment of children and young people with intellectual disabilities are urgently required to reduce avoidable mortality outcomes and increase survival rates in the population with intellectual disabilities across the lifespan.
“This is particularly indicated for the top causes of avoidable morality among children with intellectual disabilities in this research, including epilepsy, respiratory illnesses, and digestive disorders.
“These conditions may present differently in people with intellectual disabilities and impact differently on mortality.
“It is vital that we better understand how each of these conditions influence people with intellectual disabilities specifically to identify the best pathways to initiate positive changes in healthcare and beyond.
“More research to understand why people with intellectual disabilities are dying disproportionately from avoidable deaths from these specific causes to inform future interventions is needed.”
It called for research attention to be redirected towards the management of digestive, respiratory and other diseases which present differently in people with intellectual disabilities.
The authors added: “Practical solutions must be identified to help reduce avoidable deaths, such as developing better guidance and protocols for health professionals to better understand and treat the health care needs of children and young people with intellectual disabilities.
“This is important across all neighbourhoods, and a focus of professional activity in more deprived neighbourhoods is not justified for this population.”
Dr Laura Hughes-Mccormack, who led the study, said that targeted improvements in care should be developed for those with learning disabilities.
She stated: “Children and young people with learning disabilities in Scotland are facing an 11-fold increased risk of premature death and these are often deaths from treatable or preventable illnesses such as chest infections or epilepsy.”
Health Secretary Humza Yousaf has pledged the Scottish Government will use these findings to “inform our work on reducing health inequalities for people with learning disabilities”.
He said: “Unfortunately we know that people with learning disabilities can face huge health inequalities and poorer health than the rest of the population.
“We commissioned the Scottish Learning Disabilities Observatory to undertake this research to help us understand the causes of death. We will use the findings to inform our work on reducing health inequalities for people with learning disabilities.”
He added that previous research had led the Scottish Government to develop and introduce annual health checks for those with learning disabilities, adding that £2m had been given to NHS boards to implement this.