Cerebral palsy (CP) is a common lifelong neurological disability affecting 1.4–3.3 per 1,000 live births, causing mobility, coordination, muscle issues, and complications in communication, cognition, sleep, vision, and hearing. Pain affects 78% of children and 84% of adults with CP, mainly in the ankles, knees, back, hips, and feet, restricting activities, lowering quality of life, and increasing with age. The IASP defines pain as a personal experience influenced by biological, psychological, and social factors, often communicated non-verbally. Despite its prevalence, pain in CP is under-researched, with existing assessments often poor and neglecting psychological and social aspects. No suitable tool exists to measure pain in adults with CP per the IASP definition. A reliable, holistic measure is needed to determine pain prevalence, understand sensory and psychological factors, and improve management. Assessment is difficult due to cognitive and communication impairments; self-report is ideal, but proxy reporting is sometimes used. Psychological approaches can better capture pain’s emotional, cognitive, behavioural, and functional impacts. Paediatric pain measures are unsuitable for adults, requiring adult-specific tools. Rebecca, a student with CP, will lead this project, developing a holistic, IASP-aligned pain measurement tool through lived experience and co-production with the CP community, filling a crucial research gap.
