Standardizing assessment of functioning and disability in ADHD and ASD: Development of ICF Core Sets
ICF - Classification of Functioning and Impairment
Adaptive functioning and disability are considered vital components in the study of health and quality of life in Attention Deficit Hyperactivity Disorder (ADHD) and in Autism Spectrum Disorders (ASD). To facilitate the assessment and description of these concepts, the World Health Organization (WHO) has developed a comprehensive, universally accepted framework for the description of health-related functioning; the International Classification of Functioning, Disability and Health (ICF). It consists of over 1400 categories describing aspects of functioning in the following domains: (1) Body functions, defined as the physiological functions of body systems; (2) Body structures, representing the anatomical parts of the body, such as organs and limbs; (3) Activities, or the execution of tasks or actions by an individual; (4) Participation, or the involvement in a life situation; and (5) Environmental factors, described as the physical, social and attitudinal environment in which people live. Using the comprehensive framework of the ICF, user-friendly tools can be developed for describing functioning and disability. In this project we are developing such tools to facilitate and standardize the classification of functioning and disability in ADHD and ASD; so called ICF Core Sets.
Children and Youth Version - ICF-CY
Derived from the ICF in 2007, the ICF Children and Youth version (ICF-CY) was designed to capture the particular situation of the developing child. It includes all ICF categories, as well as added child-relevant categories and expanded descriptions of existing ICF categories. To adequately capture the impact of ADHD/ASD on individuals across the life span, the ICF-CY is used in the development of ICF Core Sets for ADHD/ASD.
What is ICF Core Sets?
ICF Core Sets are subgroups of ICF(-CY) categories that are selected to capture those aspects of functioning that are most likely to be affected by specific health conditions. ICF Core Sets are developed following a standardized, scientifically-structured process, outlined by the WHO and the ICF Research Branch in cooperation with the WHO Collaborating Centre for the Family of International Classifications in Germany consisting of three phases.
The preparatory phase consists of four scientific studies, each gathering information about functioning in ADHD and ASD from a different perspective:
- Systematic literature review, to capture the “research perspective” by identifying measures and outcomes used in ADHD/ASD research
- Expert survey, to capture the “opinion leader perspective” by gathering the expertise of an international pool of ADHD/ASD opinion leaders regarding relevant aspects of functioning and disability
- Focus group study, to capture the “client and other perspective” by exploring which aspects of functioning and disability are considered relevant to ADHD/ASD by clients and their caregivers
- Clinical cross-sectional study, to capture the “clinical perspective” by collecting clinicians’ descriptions of functioning and disability in their clients with ADHD/ASD
Phase I consists of an ICF Core Sets consensus conference, which is planned for 2016. At the consensus conference the information collected during the preparatory phase will be presented to a group of international experts in the field of ADHD/ASD. These experts will follow a formal decision-making process to arrive at a consensus on the ICF(-CY) categories to be included in the ICF Core Sets, resulting in the first version of ICF Core Sets for ADHD/ASD.
Phase II consists of validating the ICF Core Sets for ADHD/ASD and studying their feasibility in an international, cross-sectional, multicenter study with individuals diagnosed with ADHD/ASD.
For the development of the ICF Core Sets for ADHD/ASD, KIND collaborates with the WHO, the ICF Research Branch in cooperation with the WHO Collaborating Centre for the Family of International Classifications in Germany, the European Network of Hyperkinetic Disorders (EUNETHYDIS) for the Core Sets for ADHD, and the International Society for Autism Research (INSAR) for the Core Sets for ASD.