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 semistructured 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.