Key Points
-
People with Down syndrome experience pain but some individuals report it less often than people without Down syndrome. There are a variety of reasons why people with Down syndrome may report less pain.
-
Many people with Down syndrome have chronic health conditions that can cause chronic pain.
-
Pain may impair mental health. This can particularly be an issue with chronic pain.
-
Some individuals with Down syndrome appear to experience greater pain than people without Down syndrome.
-
Observation of a change in behavior or function is important in assessing for and diagnosing painful conditions.
What do we know about pain in people with Down syndrome?
Understanding pain in people with Down syndrome has been challenging and the understanding has changed over the years. For many years, individuals with Down syndrome and families have shared that the individual with Down syndrome did not report pain. An example of the history from a family member we have heard many times goes something like this:
“Bill (a man with Down syndrome) was playing soccer several days ago and fell after colliding with another player. He stayed down a few moments but got back up and played the rest of the game. He has been going to work for the last few days without apparent complaints of pain. However, this morning, he came into the kitchen for breakfast without wearing his socks and I noticed that his ankle was quite swollen, black, and blue.”
Upon our exam, he stated he had mild discomfort when the outside (lateral) aspect of his ankle was touched and an x-ray confirmed a fracture. Appropriate care of the fracture was provided.
How was it that the individual walked around on a fractured ankle for several days without apparent discomfort?
Previously, the answer was thought to be that people with Down syndrome had a higher pain tolerance and/or did not perceive pain. A 1999 study found that a Down syndrome mouse model had reduced responsiveness to pain. Down syndrome mouse models have an extra chromosome and are used in research. The observations (such as the example above) and the mouse study seemed to coincide. The conclusion was that people with Down syndrome had less pain perception.
However, additional study has changed our understanding.
What have studies shown?
A study published in 2000 concluded that individuals with Down syndrome experience pain and discomfort but they express it more slowly than people without Down syndrome. The study also concluded that people with Down syndrome have difficulty localizing their pain (identifying where the pain is occurring).
A study published in 2015 confirmed that people with Down syndrome experience acute and chronic pain. It also found that it takes people with Down syndrome longer to recognize pain. Additionally, the study found that people with Down syndrome were more sensitive to pain (had a greater pain response) compared to people without Down syndrome.
A study published in 2017 concluded that not all adults with Down syndrome who had painful/uncomfortable physical conditions reported pain. Those who did report pain were more sensitive to pain than people without Down syndrome. The authors of the paper noted that more research on pain in people with Down syndrome is needed.
A 2023 review paper provides a good summary of a wide variety of studies. The authors completed an extensive review on pain in people with Down syndrome. Some interesting ideas that come from that paper are:
-
Facial expressions may be a good indicator of pain regardless of whether the person has a cognitive impairment. Looking at facial expressions of people with Down syndrome may help in assessing their pain.
-
Other reliable symptoms include vocal changes (moaning and crying), social changes (such as an unwillingness to participate in normal activities or complete daily tasks), and physiological changes (shivering, becoming pale, and muscle tension).
-
Anatomical and physiological differences in the brains of people with Down syndrome may contribute to some of the differences in pain perception and reporting but the studies are not conclusive.
Assessment and treatment considerations
It is important to consider that people with Down syndrome do experience pain and some may experience greater pain than people without Down syndrome. People with Down syndrome may have difficulty reporting their perceived pain. Even if a person with Down syndrome does not say they are in pain, they may be experiencing discomfort. Other indicators of pain might be:
-
Changes in facial expressions
-
Moaning or crying
-
Shivering, becoming pale, or muscle tension
-
Unwillingness to participate in normal activities or complete daily tasks
-
Behavior changes
Observation of a change in behavior or function is important in assessing for and diagnosing painful conditions. In some people with Down syndrome, the painful condition may present with a change in behavior or a decrease in function. For example, osteoarthritis of the hip may present with decreased ability or desire to walk rather than with a complaint of pain. Pain may not only cause a change in behavior but may impair mental health. This can be particularly an issue with chronic pain.
People with Down syndrome have many co-occurring chronic health conditions that may result in acute or chronic pain. Some of those conditions may also contribute to increased perception of pain in some individuals (perception of greater pain compared to others). In our experience, in some individuals, Alzheimer’s disease, mental illness such as depression, and other health conditions may contribute to increased perception of pain.
In the medical setting, pain assessment and appropriate treatment are important parts of good health care for people with Down syndrome.