Parent‐reported pain in non‐verbal children and adolescents with cerebral palsy

AIM: This cross-sectional study aimed to determine the prevalence, frequency, and intensity of parent-reported pain among non-verbal children with cerebral palsy (CP) and explore associations with medical, demographic, and parental psychosocial factors. METHOD: Participants were parents of non-verbal outpatients (aged 2-20y) with CP at University of Malaya Medical Centre, Kuala Lumpur and two community centres. Parents answered the Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire and a pro forma regarding parent-reported frequency and intensity of pain during the preceding 4 weeks. Parental psychosocial well-being was assessed via the Depression, Anxiety and Stress Scale and Multidimensional Scale of Perceived Social Support. RESULTS: The response rate was 94%; 104 children (54 males, 50 females) were studied. The majority (51%) were in Gross Motor Function Classification System level V and 65% had spastic quadriplegia. Parents reported pain in 65%, intense pain in 17%, and daily pain in 28%. Intense and frequent pain was reported during physiotherapy. More intense pain was reported in older children (p=0.016) and those with spastic quadriplegia (p=0.020). INTERPRETATION: Caregivers of non-verbal children with CP report a high frequency of pain. Pain intensity is associated with patient factors but not parental psychosocial factors.