Cerebral palsy pain instruments: Recommended tools for clinical research studies by the National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements project

Abstract

This study describes the process of updating the cerebral palsy (CP) common data elements (CDEs), specifically identifying tools that capture the impact of chronic pain on children's everyday functioning.

A CDE is a precisely defined question paired with a set of structured responses, used systematically across different sites, studies, or clinical trials to ensure consistent data collection. The CDEs consist of specific terminology with identification of common definitions, standardized case-report forms, and standardized tools/instruments. The overarching aim of developing condition-specific CDEs is to accelerate research, enable prompt uptake of evidence into clinical practice, and to deliver the best quality of care to individuals who require it.

Following an adapted CP chronic pain tools' rating system, and a review of psychometric properties, clinical utility, and compliance with inclusion/exclusion criteria, a set of recommended pain tools was posted online for external public comment in May 2022.

Fifteen chronic pain tools met inclusion criteria, representing constructs across all components of the International Classification of Functioning, Disability and Health.

This paper describes the first condition-specific pain CDEs for a pediatric population. The novel CP CDE pain tools harmonize the assessment of chronic pain, addressing not only intensity of chronic pain, but also the functional impact of experiencing pain in everyday activities.

Beyond research applications, this comprehensive set of CP CDE pain tools also serves as a clinical resource for teaching, standardizing the selection of pain measures and pain assessments, adopting a biopsychosocial approach to pain evaluation, harmonizing data collection and reporting, and guiding quality-improvement projects to further develop the care of children and young people with CP and chronic pain.