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. 2017 Oct;26(10):1219-1231.
doi: 10.1007/s00787-017-0983-1. Epub 2017 Mar 28.

An international qualitative study of ability and disability in ADHD using the WHO-ICF framework

Soheil Mahdi  1   2 , Marisa Viljoen  3 , Rafael Massuti  4   5 , Melissa Selb  6   7 , Omar Almodayfer  8 , Sunil Karande  9 , Petrus J de Vries  3 , Luis Rohde  4   5 , Sven Bölte  10   11   12
Affiliations

An international qualitative study of ability and disability in ADHD using the WHO-ICF framework

Soheil Mahdi et al. Eur Child Adolesc Psychiatry. 2017 Oct.

Abstract

This is the third in a series of four cross-cultural 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). To explore the perspectives of individuals diagnosed with ADHD, self-advocates, immediate family members and professional caregivers on relevant areas of impairment and functional abilities typical for ADHD across the lifespan as operationalized by the ICF(-CY). A qualitative study using focus group discussions or semi-structured interviews of 76 participants, divided into 16 stakeholder groups. Participants from five countries (Brazil, India, Saudi Arabia, South Africa and Sweden) were included. A deductive qualitative content analysis was conducted to extract meaningful functioning and disability concepts from verbatim material. Extracted concepts were then linked to ICF(-CY) categories by independent researchers using a standardized linking procedure. In total, 82 ICF(-CY) categories were identified, of which 32 were related to activities and participation, 25 to environmental factors, 23 to body functions and 2 to body structures. Participants also provided opinions on experienced positive sides to ADHD. A high level of energy and drive, creativity, hyper-focus, agreeableness, empathy, and willingness to assist others were the most consistently reported strengths associated with ADHD. Stakeholder perspectives highlighted the need to appraise ADHD in a broader context, extending beyond diagnostic criteria into many areas of ability and disability as well as environmental facilitators and barriers. This qualitative study, along with three other studies (comprehensive scoping review, expert survey and clinical study), will provide the scientific basis to define ICF(-CY) Core Sets for ADHD, from which assessment tools can be derived for use in clinical and research setting, as well as in health care administration.

Keywords: ADHD; Assessment; DSM; ICD; Impairment; Neurodevelopmental disorder; Psychiatry; Qualitative study; Quality of life.

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Conflict of interest statement

Soheil Mahdi, Marisa Viljoen, Rafael Massuti, Melissa Selb, Omar Almodayfer, and Sunil Karande declares no conflict of interest related to this work. Petrus J de Vries declares no conflict of interest directly related to this work. He is on the study steering committee of three phase III clinical trials sponsored by Novartis, is co-PI on two phase clinical trials part-funded by Novartis, and is on the working committee of an international natural history study of tuberous sclerosis complex, sponsored by Novartis. L. A. R. has received grant or research support from, served as a consultant to, and served on the speakers’ bureau of Eli Lilly and Co., Janssen, Novartis and Shire. The ADHD and Juvenile Bipolar Disorder Outpatient Programs chaired by Dr. Rohde have received unrestricted educational and research support from the following pharmaceutical companies: Eli Lilly and Co., Janssen, Novartis, and Shire. Dr. Rohde has received travel grants from Shire to take part in the 2014 APA and 2015 WFADHD congresses. He has received royalties from Artmed Editora and Oxford University Press. Sven Bölte declares no conflict of interest directly related to this work. He receives royalties from Huber/Hogrefe, Kohlhammer and UTB. Sven Bölte has in the last 3 years acted as consultant or lecturer for Shire, Roche, Medice, Eli Lilly, Prima Psychiatry, GLGroup, System Analytic, Kompetento, Expo Medica, and Prophase.

Figures

Fig. 1
Fig. 1
Composition of stakeholder groups by country. Asterisk focus group discussions, double asterisk individual semi-structured interviews
See this image and copyright information in PMC

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