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, with the support of the ICF Research Branch, has undertaken a project to develop 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 preparatory phase of this ICF Core Set project has already begun. 

The preparatory phase includes a systematic literature review, a qualitative study, an expert survey, and an empirical study:

  • The systematic literature review is now complete. A manuscript outlining the results is currently being written.
  • Recruitment for the international web-based expert survey has started. A call for participation can be found on the homepage of this website.
  • The qualitative study is in its final stages of planning. It will consist of focus groups with max. 7 persons using the saturation principle, i.e. data is collected until continuous data analysis/linking to the ICF reveals no new ICF categories. Furthermore, semi-structured interviews will be conducted when participation is deemed more conducive on a one-to-one basis.
  • The cross-sectional empirical study using the ICF checklist 2.1a administered by health professionals in a clinical setting is currently being planned.

The international consensus conference is expected to take place in the Fall of 2019.

For more information, feel free to contact the project head Dr. Marij Roebroeck () or the ICF Research Branch Coordinator, .