title: Towards an ICF core set for ADHD: a worldwide expert survey on ability and disability.
abstract: This is the second in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF and Children and Youth version, ICF-CY) core sets for attention deficit hyperactivity disorder (ADHD). The objective of this stage was to gather the opinions from international experts on which ability and disability concepts were considered relevant to functioning in ADHD. An email-based survey was carried out amongst international experts in ADHD. Relevant functional ability and disability concepts were extracted from their responses and linked to the ICF/-CY categories by two independent researchers using a standardised linking procedure. 174 experts from 11 different disciplines and 45 different countries completed the survey. Meaningful concepts identified in their responses were linked to 185 ICF/-CY categories. Of these, 83 categories were identified by at least 5 % of the experts and considered the most relevant to ADHD: 30 of these were related to Body functions (most identified: attention functions, 85 %), 30 to Activities and Participation (most identified: school education, 52 %), 20 to Environmental factors (most identified: support from immediate family, 61 %), and 3 to Body structures (most identified: structure of brain, 83 %). Experts also provided their views on particular abilities related to ADHD, naming characteristics such as high-energy levels, flexibility and resiliency. Gender differences in the expression of ADHD identified by experts pertained mainly to females showing more internalising (e.g. anxiety, low self-esteem) and less externalising behaviours (e.g. hyperactivity), leading to a risk of late- and under-diagnosis in females. Results indicate that the impact of ADHD extends beyond the core symptom domains, into all areas of life and across the lifespan. The current study in combination with three additional preparatory studies (comprehensive scoping review, focus groups, clinical study) will provide the scientific basis to define the ADHD ICF/-CY core sets for multi-purpose use in basic and applied research and every day clinical practice.
authors.affiliation: Paediatric Neuropsychiatry Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Karolinska Institutet, Stockholm, Sweden.|Child and Adolescent Psychiatry Stockholm, Center for Psychiatry Research, Stockholm County Council, Stockholm, Sweden.
authors.forename: Elles
authors.initials: E
authors.lastname: de Schipper
authors.affiliation: Paediatric Neuropsychiatry Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Karolinska Institutet, Stockholm, Sweden.|Child and Adolescent Psychiatry Stockholm, Center for Psychiatry Research, Stockholm County Council, Stockholm, Sweden.
authors.forename: Soheil
authors.initials: S
authors.lastname: Mahdi
authors.affiliation: Division of Neuroscience, Medical Research Institute, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK.
authors.forename: David
authors.initials: D
authors.lastname: Coghill
authors.affiliation: Division of Child and Adolescent Psychiatry, University of Cape Town, Cape Town, South Africa.
authors.forename: Petrus J
authors.initials: PJ
authors.lastname: de Vries
authors.affiliation: Department of Psychiatry, National Taiwan University Hospital and College of Medicine, Taipei, Taiwan.
authors.forename: Susan Shur-Fen
authors.initials: SS
authors.lastname: Gau
authors.affiliation: CHILD, SIDR, Jönköping University, Jönköping, Sweden.
authors.forename: Mats
authors.initials: M
authors.lastname: Granlund
authors.affiliation: LWL-University Hospital for Child and Adolescent Psychiatry, Psychotherapy and Psychosomatics of the Ruhr University Bochum, Hamm, Germany.
authors.forename: Martin
authors.initials: M
authors.lastname: Holtmann
authors.affiliation: Learning Disability Clinic, Department of Paediatrics, Seth G.S. Medical College and K.E.M. Hospital, Mumbai, India.
authors.forename: Sunil
authors.initials: S
authors.lastname: Karande
authors.affiliation: School of Psychiatry, Prince of Wales Hospital and University of New South Wales, Sydney, Australia.
authors.forename: Florence
authors.initials: F
authors.lastname: Levy
authors.affiliation: Psychiatry Section, King Abdulaziz Medical City, College of Medicine, Riyadh, Saudi Arabia.
authors.forename: Omar
authors.initials: O
authors.lastname: Almodayfer
authors.affiliation: Child Psychiatric Division, Departmant of Psychiatry, Hospital de Clinicas de Porto Alegre, Federal University of Rio Grande do Sul, Porto Alegre, Brazil.|National Institute of Developmental Psychiatry for Children and Adolescents, São Paulo, Brazil.
authors.forename: Luis
authors.initials: L
authors.lastname: Rohde
authors.affiliation: Neurosciences and Mental Health Research Program, The Hospital for Sick Children, University of Toronto, Toronto, Canada.
authors.forename: Rosemary
authors.initials: R
authors.lastname: Tannock
authors.affiliation: Paediatric Neuropsychiatry Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Karolinska Institutet, Stockholm, Sweden. sven.bolte@ki.se.|Child and Adolescent Psychiatry Stockholm, Center for Psychiatry Research, Stockholm County Council, Stockholm, Sweden. sven.bolte@ki.se.
authors.forename: Sven
authors.initials: S
authors.lastname: Bölte
mesh_terms: D000293:Adolescent; D001289:Attention Deficit Disorder with Hyperactivity / Q000175:diagnosis*; D002648:Child; D005260:Female; D006801:Humans; D064702:International Classification of Functioning, Disability and Health / Q000592:standards*; D008297:Male; D011788:Quality of Life; D011795:Surveys and Questionnaires
keywords: ADHD; Assessment; DSM; Gender differences; ICD; Neurodevelopmental disorder; Neurodiversity; Psychiatry; Quality of life