Toolbox of multiple-item measures aligning with the ICF Core Sets for children and youth with cerebral palsy

Abstract

Selecting appropriate measure(s) for clinical and/or research applications for children and youth with Cerebral Palsy (CP) poses many challenges. The newly developed International Classification of Functioning, Disability and Health (ICF) Core Sets for children and youth with CP serve as universal guidelines for assessment, intervention and follow-up. The aims of this study were: 1) to identify valid and reliable measures used in studies with children and youth with CP, 2) to characterize the content of each measure using the ICF Core Sets for children and youth with CP as a framework, and finally 3) to create a toolbox of psychometrically sound measures covering the content of each ICF Core Set for children and youth with CP. All clearly defined multiple-item measures used in studies with CP between 1998 and 2015 were identified. Psychometric properties were extracted when available. Construct of the measures were linked to the ICF Core Sets. Overall, 83 multiple-item measures were identified. Of these, 68 measures (80%) included reliability and validity testing. The majority of the measures were discriminative, generic and designed for school-aged children. The degree to which measures with proven psychometric properties represented the ICF Core Sets for children and youth with CP varied considerably. Finally, 25 valid and reliable measures aligned highly with the content of the ICF Core Sets, and as such, these measures are proposed as a novel ICF Core Sets-based toolbox of measures for CP. Our results will guide professionals seeking appropriate measures to meet their research and clinical needs worldwide.

Keywords: Cerebral palsy; Child; Core sets; ICF; Measure; Toolbox.