ICF Core Sets for the assessment of functioning of adults with cerebral palsy

Abstract

Aim: To report on the results of the online international consensus process to develop the comprehensive and brief International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP).

Method: An online iterative decision-making and consensus process involved 25 experts, including clinicians and researchers working with adults with CP, an adult with CP, and the parents of adults with CP from all six regions of the World Health Organization. The most relevant categories were selected from a list of 154 unique second-level candidate categories to develop the ICF Core Sets for adults with CP. This list resulted from evidence gathered during four preparatory studies, that is, a systematic literature review, a qualitative study, an expert survey, and an empirical study.

Results: The consensus process resulted in the comprehensive ICF Core Set containing 120 second-level ICF categories: 33 body functions; eight body structures; 50 activities and participation; and 29 environmental factors, from which the most essential categories, 33 in total, were selected for the brief ICF Core Set. For body functions, most of the categories were mental functions and neuromusculoskeletal and movement-related functions. Body structures were mostly related to movement. All the chapters of the activities and participation component were represented, with mobility and self-care as the most frequently covered chapters. For environmental factors, most of the categories addressed products and technology and services, systems, and policies.

Interpretation: The comprehensive and brief ICF Core Sets for adults with CP were created using a new online version of an established ICF Core Set consensus process. These Core Sets complement the age-specific ICF Core Sets for children and young people with CP and will promote standardized data collection worldwide.

Figure 1

Decision‐making process. ICF, International Classification of Functioning, Disability and Health.

Figure 2

International Classification of Functioning, Disability and Health (ICF) framework including the ICF categories from the brief ICF Core Set for adults with cerebral palsy (Appendix S1, online supporting information). The checklist summarizes the functioning profile of an adult with cerebral palsy using the brief ICF Core Set. The extent of the problems can be rated using the ICF qualifiers: (0) no impairment or difficulty; (1) mild impairment or difficulty; (2) moderate impairment or difficulty; (3) severe impairment or difficulty; (4) complete impairment or difficulty. Environmental factors can be rated as barriers (from mild to complete; 1–4), facilitators (from +1 to +4), or no barriers or facilitators (0).