Development of the International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy

This doctoral dissertation comprises four studies and an expert consensus meeting charged with identifying the most relevant areas of functioning for children and youth with cerebral palsy (CP) aged 0-18 years. The conceptual framework for this project was the International Classification of Functioning, Disability and Health for children and youth (ICF-CY). According to this model, functioning - “what a person can or cannot do every day” - results from the positive and negative interactions between factors within the child, the task, and the context, including personal and environmental factors. In these studies, functioning was described using the ICF-CY units of analysis: ICF-CY categories. This project’s design featured rigorous, evidence-based quantitative and qualitative techniques. Studies I-IV gathered evidence on critical aspects of functioning for children and youth with CP from various perspectives: the research community (Study I), the international experts (Study II), the children and youth with CP and their caregivers (Study III), and the clinicians (Study IV). Data from each study were linked to the ICF-CY using linking rules. Each study identified a unique list of ICF-CY categories representing every ICF-CY component. The most prevalent components included activities and participation and body functions. Specifically, topics related to d4-Mobility, d5-Self-care, d9-Communiy civil life, b7-Neuromusculoskeletal functions and b1-Learning and applying knowledge were described often in all the studies. The lists of ICF-CY categories generated from Studies I-IV were presented to an international group of experts in the field of childhood disability. The experts, by consensus, created the ICF Core Sets for children and youth with CP. Five Core Sets were developed: a Comprehensive Core Set to be used in interdisciplinary assessments of children aged 0–18 years, a Common Brief Core Set applicable to children aged 0-18 years, and three Age-Specific Core Sets (for children younger than 6 years, between 6-