ICF Core Sets for adults with CP
This project has been performed in an international collaboration with the WHO-ICF Branch Nottwill, Switzerland, and 25 international experts (e.g. American Academy of Cerebral Palsy and Developmental Medicine, CP UP Register Sweden, CPRN Research Registry USA). The majority of the population of people with cerebral palsy (CP) is at adult age. The aim of this project was to achieve international consensus on the ICF Core Sets for adults with CP, complementing the present Core Sets that are available for children and youth with CP. This ICF Core Set includes the most relevant aspects of functioning of adults with CP.
Experts and adults with CP/their families from all over the world participated in an online iterative decision-making process according to the ICF systematic methodology. The panel reached consensus on a comprehensive Core Set of 120 topics for adults with CP, with or without intellectual disabilities. This set includes 33 body functions, 8 body structures, 50 daily activities and participation, and 29 relevant environmental factors. They also decided on the short Core Set for adults with CP, addressing the 33 most essential categories. This included intellectual functions, pain, muscle tone (body functions), upper and lower extremity structure (body structures), mobility, self-care (activities and participation), mobility devices, and health care (environmental factors). The Core Sets for adults with CP can now be implemented in clinical care and research, and will promote standardized data collection worldwide.