Attention Deficit Hyperacitivity Disorder (ADHD) is a neurodevelopmental disorder that is generally defined by inattention, hyperactivity and impulsivity. The prevalence of ADHD is estimated to be 5.3 % worldwide. It is associated with specific learning disordes, school drop-out, low self-esteem, depression, anxiety, behaviour problems, substance abuse and undeemployment. ADHD can diversely influence a person's functioning. Getting a comprehensive profile of a person's functioning goes beyond the diagnosis. Complementary to the global rating of psychological and functional problems provided by currently used multiaxial classifications such as the International Classification of Diseases (ICD) and Diagnostic and Statistical Manual of Mental Disorders (DSM) IV-TR and V, the ICF would allow for a comprehensive and standardized assessment (also considering environmental and personal factors) of the functioning of an individual with ADHD across the lifespan.

To make the ICF, a classification of 1424 categories, more practical for use in clinical practice, ICF Core Sets i.e. shortlists of ICF categories selected as most relevant for specific health conditions, have been developed. Karolinska Institute and the ICF Research Branch in collaboration with an international, multiprofessional Steering Committee have taken on the challenge to develop ICF Core Sets for persons with ADHD. The project team has decided to use the ICF version for children and youth (ICF-CY) for the study. The ICF-CY not only includes all of the categories of the reference classification ICF, it also captures the particular characteristics of the developing child into adulthood.

The preparatory phase includes:

• A scoping review on studies published from 2008-2013 was performed to identify the parameters that were and are used to quantify and report ADHD in individuals. A paper outlining the results of the scoping review was published in Eur Child Adolesc Psychiatry and can be found here (click here): http://www.ncbi.nlm.nih.gov/pubmed/26036861 .
• A qualitative study aimed at identifying relevant aspects of functioning and contextual factors from the patient-client/parent/professional caregiver/school staff perspective was conducted. Focus groups and individual semi-structured interviews were conducted in Brazil, India, Saudi Arabia, South Africa and Sweden. The manuscript outlining the methods and results of the study will be submitted by the end of 2016.
• The internet-based worldwide survey that aimed to gather the opinion of international experts on aspects of functioning and health relevant to persons with ADHD is now complete. The results were published in the Eur Child Adolesc Psychiatry and can be found here (click here): http://www.ncbi.nlm.nih.gov/pubmed/26428005.
• To describe common problems experienced by individuals with ADHD from a clinical perspective, data within a multicentre cross-sectional study was collected from patients/clients with ADHD in 5 European countries, two Asian countries, and one country in the Middle East. A case record form that covers domains of an extended ICF Checklist, Vineland Adaptive Behaviour Scales and a selection of the Adaptive Behavior Assessment System was used to collect the data. This study was completed in August 2016. A manuscript outlining the study will be submitted for publication in a peer review journal in due time.

The results of these preparatory studies were presented at an international consensus conference, a multi-stage, iterative, decision-making and consensus process that took place from 5-7 September 2016. At this consensus conference, ADHD experts from different countries worldwide and working in a broad range of professions decided the ICF categories to include in the first version of the ICF Core Sets for ADHD.

The Comprehensive ICF Core Set for ADHD contains 72 categories and the Common Brief set contains 38 categories – all at the 2nd level. To reflect the specific characteristics of different age groups of persons living with ADHD, a Brief ICF Core Set was developed for the following age groups: pre-school age group from 0-5 years old with 47 categories, school age group from 6-16 years old with 55 categories, and adults 17 years old and older with 52 categories. A manuscript detailing the consensus and decision-making process as well as the categories of the ICF Core Sets for ADHD will be submitted for publication in the first half of 2017.

For questions, please contact the project team sven.bolte@ki.se and soheil.mahdi@ki.se.