Pain report and musculoskeletal impairment in young people with severe forms of cerebral palsy: A population-based series

•There are significant levels of pain in young people with severe CP that may be going under-reported.•The Paediatric Pain Profile (PPP) is a useful adjunct to pain assessment in the cognitively impaired young person.•SAROMM scores significantly correlate with CHQ pain scores in young people with severe forms of cerebral palsy.

BackgroundWhile pain is reportedly more prevalent in more functionally impaired children with cerebral palsy, information is scant in those with poor communication skills.MethodsYoung people (4-27 years) with severe forms of cerebral palsy were recruited from a population-based register. The Child Health Questionnaire (CHQ) provided information on general health and bodily pain; the Paediatric Pain Profile (PPP) was used for participants with limited communication; and the Spinal Alignment and Range of Motion Measure (SAROMM) described musculoskeletal impairment.Results123 young people (GMFCS IV = 55 and V = 68) and their families/carers participated. Fourteen percent of CHQ responses (n = 123) reported severe/very severe pain in recent weeks, whilst 7% reported pain every/almost every day. CHQ pain report was significantly higher for young people in GMFCS level V and correlated significantly with both global health and musculoskeletal impairment. High levels of pain were recorded on the PPP for non-communicating children but only a weak correlation between PPP and CHQ scores was detected.ConclusionManaging pain in young people with severe musculoskeletal and cognitive impairment presents a huge challenge to carers and professionals. The PPP may represent a useful adjunct in those young people with severe communication difficulties.