Functioning and disability after stroke in children: using the ICF‐CY to classify health outcome and inform future clinical research priorities

Abstract

The International Classification of Functioning Disability and Health, Child-Youth version (ICF-CY) provides a framework for describing and evaluating health, intervention outcomes, and needs assessment. It can, however, also serve as a system for classifying the focus of outcome studies and identification of gaps in current knowledge. The paediatric arterial ischaemic stroke (AIS) population was targeted. Multiple databases were systematically searched for AIS outcome studies focussing on functioning or disability. Findings were rated using the ICF-CY framework. Twenty-eight studies were identified. Most were cross-sectional and age range at assessment varied widely. Sixty-seven different standardized measures were used, predominantly evaluating body functions. The most common domains of activity and participation reported were learning and applying knowledge, general tasks and demands, and self-care skills. Health-related quality of life was measured in nine papers. Environmental factors were rarely evaluated. AIS outcome studies addressing the relationship between body structures and functions (e.g. brain lesion characteristics, neurological examination findings) and activities, participation, and quality of life have emerged in recent years. Comparison of findings across studies is complicated by design and tool selection. The relationship between components of activity limitation and participation restriction is rarely explored.