Bodily pain and health‐related quality of life in children with cerebral palsy

Abstract

Pain frequency and its association with participation, function, and health‐related quality of life were evaluated in a sample of 198 children (58% male; mean age 10 years 7 months, SD 3 years 11 months; range 5 to 18 years) with moderate to severe cerebral palsy (CP). Gross Motor Functional Classification System (GMFCS) levels were III to V (23% level III, 23% level IV, 31% level V without a gastrostomy tube, and 23% were level V with a gastrostomy tube). Assessment was carried out using the parent‐report Child Health Questionnaire (CHQ) and questions assessing health, medical utilization, and medication use. Pain frequency ranged from‘none’to‘every day’. Eleven percent of parents reported pain almost every day ( z score=‐0.38, p < 0.001). Pain was related to severity of motor impairment and the presence of a gastrostomy; parents of the most severely affected children reported the highest pain frequency ( p =0.05). Pain was correlated with school days missed ( p =0.03) and days in bed ( p =0.01). Children taking gastrointestinal medications were reported to have greater pain frequency ( p < 0.001). The Parental Impact ‐Emotional subscale of the CHQ was correlated with reported pain ( r =0.38, p < 0.001). Pain was frequent in children with moderate or severe CP. Pain was more prevalent with more severe impairment and was associated with educational and social consequences.