Without Uttering a Word: Pain assessment and management in intellectually disabled children

This thesis addressed several studies on pain assessment and management, as well as general anesthesia and sedation, in intellectually disabled children with a focus on children with Down syndrome. The pain sensitivity of children and adults with Down syndrome has been widely debated but rarely studied. Parents rated their children with Down syndrome as less sensitive to pain, but this was not confirmed by quantitative sensory testing. Children with Down syndrome will remain dependent of pain assessment by proxy, since self-report was not adequate. Previous studies found that intellectually disabled children receive lower doses of analgesics during general anesthesia. On the other hand, children with Down syndrome are often described more agitated and “difficult to sedate” after surgery. We found no reasons for different morphine dosing after cardiac surgery in children with Down syndrome compared to children without Down syndrome. As pain behavior of intellectually disabled children and neonates is different from what caregivers would expect, more objective methods for the assessment of pain and distress are badly needed. This asks joint effort of medical professionals, researchers, the industry and even parents. More than a million intellectually disabled children, children below the age of 4, and demented elderly in the Netherlands will benefit from improved objective methods to measure pain, as self-report may be unreliable or impossible.

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