A new study published on December 2, 2019, in the Journal of Applied Research in Intellectual Disabilities shows why people with intellectual disabilities (ID) typically have a shorter life span compared to the general population. The UNSW Sydney researchers uncover factors that lead to a higher risk of death among people with ID.
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The researchers looked at the administrative records of over 42 000 people with ID on disability services rolls in New South Wales, over the period 2005 to 2015. The results show that people with ID have a shortened life expectancy if they have additional health conditions or disabilities.
- Cancer: having cancer with ID led to an almost 8-fold risk of death within the following 10 years compared to those with ID but without cancer.
- Mental illness: the mortality risk was 4-fold in this group.
- Down syndrome: the risk was 3.5 times higher with this condition.
- Cerebral palsy: its presence is linked to a doubled death rate.
- Other factors associated with an increased mortality rate included epilepsy, cerebral palsy and renal disease.
Why comorbidities are deadly
Not satisfied with these reasons, the researchers dug deeper to find out the true explanation. They knew, from previous research, that many of these deaths could have been prevented. They found out the simple but horrifying explanation: people with ID find it hard to get the right kind of health care.
Most often, according to the study, these people receive health care when it is too late to help, and what they do receive is absurdly scanty. For instance, cancer is diagnosed much too late, treatable cancers are not managed aggressively, and the risk of death is increased.
Case histories testify to medical reluctance to take symptoms or even diagnoses seriously, and to provide the right therapy, unlike the case with people who do not have ID. For instance, the case of a 44-year-old man capable of living in supervised housing but had his testicular cancer diagnosis delayed followed by delayed surgery and failure to follow up with indicated chemotherapy is telling. One year later, he was dead – of a potentially treatable condition.
His mother, Julie Hoystead, says, “Instead, the hospital failed to schedule him for surgery and then, after surgery, it was decided he would not be given the option of chemotherapy, assuming that he would not sit still during treatments. We need all health professionals to be educated about intellectual disability. Discrimination against, and misinformation about people with intellectual disability should have no place in our health services.”
All-round failure in health care
Researcher Julian Trollor defines these attitudes as lack of knowledge, wrong attitudes and failed practice when it comes to working with patients who have ID – and the victim is the patient in every case. He recommends that public health include a focus on intervention and treatment of co-existing medical conditions in people with ID. This could, for instance, include making information on screening or detection of cancer available to these individuals by using the proper type of format.
The report shows a higher risk of death associated with mental illness in people with ID for the first time ever. Some reasons may be the metabolic side effects of medication, such as weight gain, and the lack of activity in the lifestyle. The researchers argue that caring for these individuals should include preventive strategies for cardiac and metabolic disease, including medication and lifestyle modification. This is another instance of health care quality suffering due to the presence of ID in a person with mental illness.
Epilepsy is sometimes the cause of accidents and injuries and occasionally of sudden unexplained death. The way out is to meticulously manage epilepsy, controlling the seizures and preventing accidents such as drowning deaths.
Cerebral palsy may have associated feeding and swallowing problems that only become worse with age and are not typically managed aggressively by the healthcare professionals. While the reasons for this may include lack of training and understanding, preventive care must be provided to avoid such deadly complications. Similar is the case with Down syndrome, which is accompanied by many potentially fatal complications such as leukemia. Being more in earnest when it comes to looking for complications could help reduce the high death rate in these conditions.
Researcher Simone Reppermund says people with ID must overcome a lot of hurdles to get the health care they deserve, from communicating their needs in understandable ways to telling the doctor what they want to know. Besides these initial obstacles, the health system itself does not have a model of care for people with ID, at GP level.
To do better, the system would need to train GPs to adjust their practical methods and to encourage them to spend more time in preventing disease in such individuals. Funding within Medicare Benefits Scheme, as well as a more ID-friendly health policy, would be also required components to ensure the prognosis for this group improves over the long term.
Experts in this field comment that the results are “appalling”, and say this study will be of great help in formulating the policy for improving the health of Australian individuals with ID. It may also be cited before commissioners inquiring into violence and abuse against people with disabilities and help to promote better access to healthcare for this group of people.
Reppermund, S, Srasuebkul, P, Dean, K, Trollor, JN. Factors associated with death in people with intellectual disability. J Appl Res Intellect Disabil. 2019; 00: 1– 10. https://doi.org/10.1111/jar.12684, https://onlinelibrary.wiley.com/doi/10.1111/jar.12684