Standardized Cross-Cultural Assessment of Ability and Disability in ASD: The New WHO ICF-CY Core Sets

Background:

The International Classification of Functioning, Disability and Health (ICF) by the World Health Organization (WHO) provides a universal framework to describe health-related functioning. The ICF is based on a bio-psycho-social model, comprising over 1600 categories of functional domains: body functions, body structures, activities and participation and environmental factors. In order to make the ICF more applicable in certain health conditions, so called “ICF core sets”, that are user friendy, empirically derived condensed versions of the ICF with a high fit for a certain diagnosis have been generated. Core set development is based on a rigorous scientific process including four preparatory studies in an international, cross-disciplinary setting: A systematic literature review (research perspective), an expert survey (expert perspective), qualitative study (client and caregiver perspective) and clinical cross-sectional study (clinical perspective). The findings from these studies are evaluated and compressed by a multi-stage voting procedure during an international consensus conference, resulting in the respective core sets.

Objectives:

To report the results of the ICF core set consensus conference for Autism Spectrum Disorder (ASD). Preparatory studies had yielded 168 ICF candidate categories for ASD. This evidence was used as a starting point to generate a Comprehensive, a Common Brief, and three age-specific WHO ICF ASD core sets.

Methods:

Twenty ASD experts, representing all six WHO-regions and various disciplines, were invited to participate in the 3-day consensus conference. The experts followed a three-stage decision-making and consensus process to decide on the ICF categories that should be included in the ICF Core Sets for ASD. In the first stage, the experts prioritized and selected ICF categories to be included in the Comprehensive ICF core set. The second stage consisted of defining the Common Brief core set for ASD. The third stage involved developing age-specific Brief core sets for ASD: ages 0 to 5 years, 6 to 16 and 16+ years.

Results:

Finally, 111 categories were included in the Comprehensive ICF Core Set with 59 categories from the activities and participation component, 31 environmental factors, 20 body functions and 1 body structure. The Common Brief ICF core set included 46 categories; 17 activities and participation categories, 15 environmental factors and 14 body functions. When defining the age-specific Brief ICF core sets, 14 categories were found to be common in all of the age groups. Thus, these 14 categories were added to the common Brief ICF core set, resulting in a set of 60 ICF categories. Together with the 60 Common Brief set categories, the Brief ICF core set for the 0 to 5 age group consisted of 73 categories, while the 6 to 16 age group had 81 categories and the adult group 79 categories.

Conclusions:

When defining the ICF core sets for ASD, a large number of categories were selected across all of the ICF components, supporting the notion that ASD impacts wide ranges of functions and contextual factors in life. From these core sets, assessment tools will be derived for future usage in clinical and research setting as well as health care administration.