Pain in Children with Severe Cognitive Impairment

All children have pain (e.g., bumps, needle-pain, headaches).  Past research on pain has demonstrated that the percentage of children reporting pain differs for children at different ages and differs for pain at different sites (head, abdominal pain, etc.).  It is not well understood how children with severe cognitive impairments differ in experiencing pain.  Do they feel pain more often?  Do they have pain that is different in location or quality?  Because many children with severe cognitive impairments also have underlying chronic conditions and more reasons for accidentally and purposive injuries, answering this question is important. 

Children and their caregivers were recruited through child neurologists who are associated with a hospital serving children in 3 maritime provinces of Canada.  Of 143 children eligible for recruitment into the study, 101 caregivers agreed to participate.  All children had profound mental retardation.  Collected information included: demographic information, neurological diagnosis (e.g., cerebral palsy, focal seizures, etc.), level of diagnosed mental retardation, functional adaptation, and a pain checklist that was developed for caregivers and observers of children who are too low-functioning to communicate.   

During a 4-week period, 78% of these children experienced pain at least once; 62% had non-accidental pain.  Accidental pain was most frequent (30% of pain) followed by gastrointestinal pain (22%), infection (20%), and musculoskeletal (19%) pain.  Mean intensity was 6.1 for non-accidental pain and 3.8 for accidental pain (0 = No pain; 10 = worst pain).  Mean duration was longer than 9 hours per week.  Children with the fewest abilities experience the most pain.   The authors recommend that medical examinations should be done in future research to further validate this pain.

(Breau LM et al.  Arch Pediatr Adolesc Med 2003; 157:1219-1226)

Comment: This amount of pain among children who cannot communicate is quite disturbing.  Repeated and frequent pain likely has effects on these children’s behavior and progress in school, not to mention the toll it takes on their already compromised quality of life.  Consider sharing this sobering research with those who teach these children.                          –H.T.