Objective: To determine the prevalence and associations of self- and parent-reported pain in young people with cerebral palsy (CP).
Design and setting: Cross-sectional questionnaire survey conducted at home visits in nine regions in seven European countries. Participants were 13 to 17-year-olds (n=667) drawn from population CP registers in eight regions and from multiple sources in one region. 429 could self-report; parent-reports were obtained for 657. Data were collected on: severity, frequency, site and circumstances of pain in previous week; severity of pain associated with therapy in previous year.
Results: The estimated population prevalence of any pain in previous week was 74% (95% CI 69% to 79%) for self-reported pain and 77% (95% CI 73% to 81%) for parent-reported pain. 40% experienced leg pains, 34% reported headaches and 45% of those who received physiotherapy experienced pain during therapy. Girls reported more pain than boys (OR=2.1, 95% CI 1.5 to 3.0) and young people reported more pain if they had emotional difficulties (comparing highest and lowest quartiles: OR=3.1, 95% CI 1.7 to 5.6). Parents reported more pain in children with emotional difficulties (OR=4.2, 95% CI 2.7 to 6.6), or with more impaired walking ability.
Conclusions: Pain in young people with CP is highly prevalent. Because pain causes immediate distress and is associated with lower subjective well-being and reduced participation, clinicians should routinely assess pain. Clinical interventions to reduce pain should be implemented and evaluated. The efficacy of medical and therapeutic interventions causing pain should be re-examined to establish if their benefit justifies the pain and fear of pain that accompany them.
Keywords: Adolescent Health; Neurodisability; Pain.