The Incidence of Pain in Children with Severe Cognitive Impairments

Background: Children with severe cognitive impairments are believed to suffer pain frequently. Objective: To document the frequency, duration, and intensity of pain experienced by children with severe cognitive impairments. Design: Cohort study using surveys during 1 year. Setting: Tertiary-care pediatric center for 3 provinces in eastern Canada. Participants: Caregivers of 94 children and adolescents with moderate to profound mental retardation, aged 3 to 18 years (mean age, 10.1 years [SD, 4.3 years]). Forty-four children had cerebral palsy and 59 had a seizure disorder; 83 lived with family, and 11 in group homes. Main Outcome Measure: Caregivers completed 4 semi-structured telephone surveys, reporting the cause, duration (in minutes), and intensity (on a scale of 0-10) of children's pain during the previous week. Results: A total of 406 episodes of pain occurred. During a 4-week period, 73 children (78%) experienced pain at least once, and 58 (62%) had nonaccidental pain. Accidental pain was most frequent (n=28 [30%]), followed by gastrointestinal tract (n=21 [22%]), infection (n = 19 [20%]), and musculoskeletal (n = 18 [19%]) pain. Each week, 33 to 49 children (35%-52%) had pain. Mean pain duration was longer than 9 hours per week (SD, 1.7-2.4 hours). Mean intensity was 6.1 (SD, 2.2) for nonaccidental pain and 3.8 (SD, 2.1) for accidental pain. Children with the fewest abilities had more nonaccidental pain (F_4.89=3.7; P=.007), and children with greater motor abilities had more accidental pain (F_4.89=2.8; P=.03). Pain did not vary with demographic characteristics. Conclusions: Children with severe cognitive impairments experience pain frequently, mostly not due to accidental injury. Children with the fewest abilities experience the most pain.