Background and aims This study aimed to (i) determine the prevalence of parent-reported pain among non-verbal children with cerebral palsy (CP), (ii) determine the frequency and intensity of pain and (iii) explore associations with medical, parental and socioeconomic factors.
Methods The study was cross-sectional. Participants were parents of non-verbal CP outpatients at University Malaya Medical Centre, Kuala Lumpur and two centres in the surrounding area. Patients were aged 2–19 years. Written informed consent was obtained. The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD©) Questionnaire and a separate proforma were utilised for assessment of frequency and intensity of pain during the preceeding 4 weeks. Parental psychosocial well being was assessed via the Depression, Anxiety and Stress Scale (DASS-21) and the Multidimensional Scale of Perceived Social Support (MSPSS).
Results The response rate was 94%, including 104 children (54 boys, 50 girls). The majority (51%) had GMFCS level V and 65% had spastic quadriplegia. Reported pain was 65%. The most frequent and intense pain was during physiotherapy. Nineteen (18%) reported that their children experienced pain >1 time per day and 10% reported daily pain. Severe pain was reported by 17%. There were no significant factors associated with frequency of pain. Older children (p < 0.05), those with spastic quadriplegia (p < 0.05) and poorer quality of life (p < 0.05) had more intense pain. GMFCS level, gender, co-morbidities, parental psychosocial scores, parental education and income were not significant modifying factors of intensity of pain.
Conclusion Recognition of pain in non-verbal CP patients is crucial for holistic management.