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 formaregarding 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 Scaleof 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 Systemlevel 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.