Many people with intellectual disabilities are diagnosed with cancer when the cancer has already spread (metastasized) and are less likely to survive.
Intellectual disability is a lifelong condition that begins before adulthood and reduces a person’s ability to understand new or complex information, learn new skills and cope independently – in the UK it is known as a ‘learning disability’.
Cancer is approximately 1.5 times more likely to be reported as a cause of death in people with intellectual disabilities than in people without intellectual disabilities, and in a recent study, my colleagues and I found that cancer was the second leading cause of death for people with intellectual disabilities living in care homes in Ireland.
Cancer is more likely to be detected later in this cohort for several reasons, one of which is the attitude of health care providers, which may be influenced by stigma, negative past experiences, and communication barriers.
Other problems include underestimating the severity of a patient’s symptoms or attributing symptoms to intellectual disability rather than biological causes. For example, if a patient visits a doctor because they are self-harming, the doctor may assume this is due to intellectual disability rather than a sign of distress caused by other symptoms that the patient cannot express in words.
Many people in this population have long-term health problems, including higher rates of obesity, physical inactivity and mental health issues, which make them more likely to develop cancer or have a poor prognosis. They are more likely to be poor, unemployed and lonely, and to have unstable housing situations. Some studies have found that they are less likely to participate in cancer screening programs.
People with intellectual disabilities are often socially isolated and physically inactive. sezer66/Shutterstock
People with intellectual disabilities often have poor communication skills and therefore may not be able to communicate their thoughts about the symptoms they are experiencing. It is therefore the responsibility of medical professionals to identify the signs of illness, which can be difficult.
All of these risks combined explain why people with the disorder may have delayed cancer diagnoses or not be diagnosed at all.
Make reasonable adjustments
In the UK, a recent study found that more than 40% of adults with intellectual disabilities who died from bowel cancer did so before they reached the age of screening.
Improving cancer care requires health professionals to make reasonable adjustments for this group of people. These adjustments could include testing at a younger age, longer consultation times, access to information that is easy for them to understand, participation in decision-making, and providing a hospital passport with details about their capabilities, needs and overall health.
In England, health professionals are required to undergo training in intellectual disability. This training provides an overview and awareness of the support that people with intellectual disability need, and ensures that health and social care staff have the right skills and knowledge to provide care to people with intellectual disability.
This training at a national level is unique and could be utilised to improve healthcare for people with this disorder in Ireland and other countries.
Although this cohort of people are living longer than others, they are developing and dying at a higher rate from cancer. To detect cancer earlier and improve their chances of survival, health and care staff need to be aware that this population will experience greater challenges and risks, and will be more likely to receive a terminal diagnosis.
To improve this situation, increased cancer screening uptake, reasonable adjustments and training are urgently needed.