Identifying relevant areas of functioning in children and youth with Cerebral Palsy using the ICF-CY coding system: From whose perspective?

Aims: A standardized methodology endorsed by the World Health Organization was used to select the most relevant International Classification of Functioning, Disability and Health for children and youth (ICF-CY) categories to inform the development of the ICF Core Sets for CY with Cerebral Palsy (CP). The aim of this study was to appraise comparatively the results of the four studies included in the preparatory phase of the project exploring relevant areas of functioning in CY with CP. Methods: ICF-CY categories identified in the preparatory studies - systematic review, global expert survey, qualitative study, and clinical study - were ranked. We compared the ranking percentile scores of the categories across studies. Results: Each study emphasized different ICF-CY components and provided unique categories. Professionals from the health, education and social sectors described areas of functioning that were well distributed across the ICF-CY components (global expert survey), CY with CP and caregivers highlighted areas within the components activity and participation (a & p) and environmental factors (qualitative study), while the research community and clinical encounters mainly focused on body functions and a & p (systematic review and clinical study). Interpretation: This study highlights the need to consider all relevant perspectives when describing the functional profile of CY with CP. (C) 2014 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.