ICF RESEARCH BRANCH - ICF Core Set for adults with cerebral palsy

ICF Core Set for adults with cerebral palsy

Cerebral palsy (CP) is one of the most common motor developmental disorders in children, with 2-3 new cases per 1,000 live births. Although CP occurs during infancy and early childhood, the majority of the people with CP are adults. Adults with CP have disabilities and some health conditions such as joint deformity, pain and fatigue etc. and are consumers of multiple health and social resources. Given this, having a common language to facilitate communication across disciplines and sectors, health care systems and services, as well as being able to identify and measure outcome are essential. The International Classification of Functioning, Disability, and Health (ICF) can serve as a common language and could also prove to be helpful in standardizing the selection of outcome measures in adults with CP.

As a first step in exploring the utility of the ICF in standardizing the selection of outcome measures in adults with CP, the Department of Rehabilitation Medicine at Erasmus MC University Medical Center and Rijndam Rehabilitation, with the support of the ICF Research Branch, developed an ICF Core Set for adults with CP. ICF Core Sets for children and youth with CP already exist. However, there is increasing attention on adults with CP in research and clinical care.

The project encompassed a preparatory phase that included a systematic literature review, a qualitative study, an expert survey, and an empirical study, and an international consensus conference, during which the Comprehensive and Brief ICF Core Sets for adults with CP were decided. Click on the following weblinks to access the publications which reported on these studies and on the international consensus conference:

Systematic literature review - https://pubmed.ncbi.nlm.nih.gov/30985004/
Expert survey - https://pubmed.ncbi.nlm.nih.gov/32313963/
Qualitative study - https://pubmed.ncbi.nlm.nih.gov/33634853/
Cross-sectional empirical study - https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.14661 (Noten S et al. Scientific Session, p. 15-16)
International Consensus Conference - https://pubmed.ncbi.nlm.nih.gov/34800032/

The comprehensive version of the ICF Core Set for adults with CP contains 120 ICF categories while the brief version 33 categories. The list of categories for both versions can be found in the Download section of this website.

These core sets can also be found in the web-based ICF documentation tool www.icf-core-sets.org. This tool enables users to select a specific core set and rate a person's functioning based on the selected core set categories using ICF qualifiers.

For more information, feel free to contact the project head Dr. Marij Roebroeck (m.roebroeck@erasmusmc.nl) or the ICF Research Branch Coordinator, melissa.selb@paraplegie.ch.