Establishing consensus for the assessment of chronic pain in children and young people with cerebral palsy: a Delphi study.

PURPOSE: Inconsistent and inadequate pain assessment practices in cerebral palsy (CP) have resulted from a lack of standardisation of pain assessment, limited use of appropriate tools and failure to integrate disability and biopsychosocial models. To assist with improving consistency, this study aimed to establish consensus from key stakeholders regarding domains considered essential for measuring chronic pain in children and young people with CP. METHOD: A modified electronic Delphi study was conducted on 83 stakeholders, including clinicians, researchers, people with CP and parents of children with CP. Participants rated 18 domains sourced from existing literature as either "core", "recommended", "exploratory" or "not required". RESULTS: After two rounds of surveys, 12 domains were considered core: pain location, pain frequency, pain intensity, changeable factors, impact on emotional wellbeing, impact on participation, pain communication, influence on quality of life, physical impacts, sleep, pain duration and pain expression. CONCLUSION: These domains reflect the complexity of pain in a heterogeneous population where medical comorbidities are common and communication and intellectual limitations impact significantly on the ability of many to self-report. The domains will be utilised to build a framework of pain assessment specific to children and young people with CP guided by the biopsychosocial model.Implications for rehabilitationChronic pain is under-identified and poorly assessed in the cerebral palsy (CP) population.The perspectives of clinicians, researchers and consumers are vital for developing a framework for chronic pain assessment in CP.Consensus of key stakeholders found 12 domains considered essential to incorporate into a chronic pain assessment model in CP.

Acute and Chronic Pain in Children and Adolescents With Cerebral Palsy: Prevalence, Interference, and Management.

OBJECTIVE: To determine the prevalence, interference, and management of acute and chronic pain among youth with cerebral palsy (CP) aged 5-18 years attending outpatient rehabilitation services. DESIGN: A cross-sectional study using the Faces Pain Scale-Revised, Patient Reporting Outcomes Measurement Information System Pediatric Pain Interference Scale, and the Cerebral Palsy Quality of Life questionnaire. Where children were unable to self-report, parent or caregiver proxy was obtained. SETTING: Outpatient rehabilitation. PARTICIPANTS: Participants (N=280) with CP aged 5-18 years and their parent or caregiver. Self-report was obtained by 45.7% (n=128) and proxy-report was obtained by 54.3% (n=152) of the cohort. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Presence or absence of acute pain and chronic pain. Secondary measures were pain intensity, pain interference, pain management, and quality of life. RESULTS: Acute pain and chronic pain were reported by 67.1% and 31.4% of participants, respectively. Of those reporting acute pain, 42% also experienced chronic pain. Factors that increased the odds of chronic pain were: predominately dyskinesia (odds ratio [OR]=3.52; 95% confidence interval [CI], 1.64-7.55); mixed spasticity-dyskinesia (OR=1.93; 95% CI, 1.07-3.47); bilateral involvement (OR=3.22; 95% CI, 1.844-5.61) and Gross Motor Function Classification System level IV (OR=2.32; 95% CI, 1.02-5.25), and V (OR=3.73; 95% CI, 1.70-8.20). Pain frequently interferes with sleep, attention, ability to have fun, and quality of life. Short-acting pharmacologic analgesics, thermotherapy, hydrotherapy, and massage were commonly used for pain management. CONCLUSIONS: Routine screening for pain is critical for early identification and intervention. Multimodal interventions are needed to address the biopsychosocial model of pain, and should be tailored for all abilities across the CP spectrum.