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Published in: European Child & Adolescent Psychiatry 10/2017

Open Access 01-10-2017 | Original Contribution

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

Authors: Soheil Mahdi, Marisa Viljoen, Rafael Massuti, Melissa Selb, Omar Almodayfer, Sunil Karande, Petrus J. de Vries, Luis Rohde, Sven Bölte

Published in: European Child & Adolescent Psychiatry | Issue 10/2017

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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.
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Literature
1.
go back to reference Thomas R, Sanders S, Doust J, Beller E, Glasziou P (2015) Prevalence of attention-deficit/hyperactivity disorder: a systematic review and meta-analysis. Pediatrics 135:994–1001CrossRef Thomas R, Sanders S, Doust J, Beller E, Glasziou P (2015) Prevalence of attention-deficit/hyperactivity disorder: a systematic review and meta-analysis. Pediatrics 135:994–1001CrossRef
3.
go back to reference Polanczyk G, de Lima MS, Horta BL, Biederman J, Rohde LA (2007) The worldwide prevalence of ADHD: a systematic review and metaregression analysis. Am J Psychiatry 164:942–948CrossRefPubMed Polanczyk G, de Lima MS, Horta BL, Biederman J, Rohde LA (2007) The worldwide prevalence of ADHD: a systematic review and metaregression analysis. Am J Psychiatry 164:942–948CrossRefPubMed
4.
go back to reference Simon V, Czobor P, Bálint S, Mészáros Á, Bitter I (2009) Prevalence and correlates of adult attention-deficit hyperactivity disorder: meta-analysis. Br J Psychiatry 194:204–211CrossRefPubMed Simon V, Czobor P, Bálint S, Mészáros Á, Bitter I (2009) Prevalence and correlates of adult attention-deficit hyperactivity disorder: meta-analysis. Br J Psychiatry 194:204–211CrossRefPubMed
5.
go back to reference American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Pilgrim Press, WashingtonCrossRef American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Pilgrim Press, WashingtonCrossRef
6.
go back to reference Loe IM, Feldman HM (2007) Academic and educational outcomes of children with ADHD. J Pediatr Psychol 32:643–654CrossRefPubMed Loe IM, Feldman HM (2007) Academic and educational outcomes of children with ADHD. J Pediatr Psychol 32:643–654CrossRefPubMed
7.
go back to reference Barkley RA, Murphy KR (2010) Impairment in occupational functioning and adult ADHD: the predictive utility of executive function (EF) ratings versus EF tests. Arch Clin Neuropsychol 25:157–173CrossRefPubMedPubMedCentral Barkley RA, Murphy KR (2010) Impairment in occupational functioning and adult ADHD: the predictive utility of executive function (EF) ratings versus EF tests. Arch Clin Neuropsychol 25:157–173CrossRefPubMedPubMedCentral
9.
go back to reference Halmoy A, Fasmer OB, Gillberg C, Haavik J (2009) Occupational outcome in adult ADHD: impact of symptom profile, comorbid psychiatric problems, and treatment: a cross-sectional study of 414 clinically diagnosed adult ADHD patients. J Atten Disord 13:175–187CrossRefPubMed Halmoy A, Fasmer OB, Gillberg C, Haavik J (2009) Occupational outcome in adult ADHD: impact of symptom profile, comorbid psychiatric problems, and treatment: a cross-sectional study of 414 clinically diagnosed adult ADHD patients. J Atten Disord 13:175–187CrossRefPubMed
10.
go back to reference Jonsson U, Alaie I, Wilteus-Löfgren A, Zander E, Marschik PB, Coghill D, Bölte S (2016) Annual research review: quality of life and childhood mental and behavioral disorders—a critical review of the research. J Child Psychol Psychiatry. doi:10.1111/jcpp.12645 (epub ahead of print) PubMed Jonsson U, Alaie I, Wilteus-Löfgren A, Zander E, Marschik PB, Coghill D, Bölte S (2016) Annual research review: quality of life and childhood mental and behavioral disorders—a critical review of the research. J Child Psychol Psychiatry. doi:10.​1111/​jcpp.​12645 (epub ahead of print) PubMed
11.
go back to reference Biederman J, Petty CR, Woodworth KY, Lomedico A, Hyder LL, Faraone SV (2012) Adult outcome of attention-deficit/hyperactivity disorder: a controlled 16-year follow-up study. J Clin Psychiatry 73:941–950CrossRefPubMed Biederman J, Petty CR, Woodworth KY, Lomedico A, Hyder LL, Faraone SV (2012) Adult outcome of attention-deficit/hyperactivity disorder: a controlled 16-year follow-up study. J Clin Psychiatry 73:941–950CrossRefPubMed
12.
go back to reference Nigg J (2013) Attention-deficit/hyperactivity disorder and adverse health outcomes. Clin Psychol Rev 33:215–228CrossRefPubMed Nigg J (2013) Attention-deficit/hyperactivity disorder and adverse health outcomes. Clin Psychol Rev 33:215–228CrossRefPubMed
13.
go back to reference De Schipper E, Mahdi S, Coghill D, de Vries PJ, Shur-Fen Gau S, Granlund M, Holtmann M, Karande S, Levy F, Almodayfer O, Rohde L, Tannock R, Bölte S (2015) Towards an ICF core set for ADHD: a worldwide expert survey on ability and disability. Eur Child Adolesc Psychiatry 24:1509–1521CrossRefPubMedPubMedCentral De Schipper E, Mahdi S, Coghill D, de Vries PJ, Shur-Fen Gau S, Granlund M, Holtmann M, Karande S, Levy F, Almodayfer O, Rohde L, Tannock R, Bölte S (2015) Towards an ICF core set for ADHD: a worldwide expert survey on ability and disability. Eur Child Adolesc Psychiatry 24:1509–1521CrossRefPubMedPubMedCentral
14.
go back to reference Healey D, Rucklidge JJ (2006) An investigation into the relationship among ADHD symptomatology, creativity, and neuropsychological functioning in children. Child Neuropsychol 12:421–438CrossRefPubMed Healey D, Rucklidge JJ (2006) An investigation into the relationship among ADHD symptomatology, creativity, and neuropsychological functioning in children. Child Neuropsychol 12:421–438CrossRefPubMed
15.
go back to reference Abraham A, Windmann S, Siefen R, Daum I, Güntürkün O (2006) Creative thinking in adolescents with attention deficit hyperactivity disorder (ADHD). Child Neuropsychol 12:111–123CrossRefPubMed Abraham A, Windmann S, Siefen R, Daum I, Güntürkün O (2006) Creative thinking in adolescents with attention deficit hyperactivity disorder (ADHD). Child Neuropsychol 12:111–123CrossRefPubMed
16.
go back to reference World Health Organization (2001) International classification of functioning, disability and health: ICF. World Health Organization, Geneva World Health Organization (2001) International classification of functioning, disability and health: ICF. World Health Organization, Geneva
17.
go back to reference World Health Organization (2007) International classification of functioning, disability and heath: Children and youth version: ICF-CY. World Health Organization, Geneva World Health Organization (2007) International classification of functioning, disability and heath: Children and youth version: ICF-CY. World Health Organization, Geneva
18.
go back to reference World Health Organization (2011) International statistical classification of diseases and related health problems—10th revision. ICD-10. World Health Organization, Geneva World Health Organization (2011) International statistical classification of diseases and related health problems—10th revision. ICD-10. World Health Organization, Geneva
19.
go back to reference Escorpizo R, Kostanjsek N, Kennedy C, Robinson Nicol MM, Stucki G, Üstün TB, Functioning Topic Advisory Group (fTAG) of the ICD-11 Revision (2013) Harmonizing WHO’s international classification of diseases (ICD) and international classification of functioning, disability and health (ICF): importance and methods to link disease and functioning. BMC Public Health 13:742CrossRefPubMedPubMedCentral Escorpizo R, Kostanjsek N, Kennedy C, Robinson Nicol MM, Stucki G, Üstün TB, Functioning Topic Advisory Group (fTAG) of the ICD-11 Revision (2013) Harmonizing WHO’s international classification of diseases (ICD) and international classification of functioning, disability and health (ICF): importance and methods to link disease and functioning. BMC Public Health 13:742CrossRefPubMedPubMedCentral
20.
go back to reference Bölte S (2009) The ICF and its meaning for child and adolescent psychiatry. Zeitschrift für Kinder- und Jugendpsychiatrie und Psychotherapie 37:495–497CrossRefPubMed Bölte S (2009) The ICF and its meaning for child and adolescent psychiatry. Zeitschrift für Kinder- und Jugendpsychiatrie und Psychotherapie 37:495–497CrossRefPubMed
21.
go back to reference Bölte S, De Schipper E, Robison JE, Wong VCN, Selb M, Singhal N, De Vries PJ, Zwaigenbaum L (2014) Classification of functioning and impairment: the development of ICF core sets for autism spectrum disorder. Autism Res 7:167–172CrossRefPubMed Bölte S, De Schipper E, Robison JE, Wong VCN, Selb M, Singhal N, De Vries PJ, Zwaigenbaum L (2014) Classification of functioning and impairment: the development of ICF core sets for autism spectrum disorder. Autism Res 7:167–172CrossRefPubMed
22.
go back to reference De Schipper E, Lundequist A, Coghill D, De Vries PJ, Granlund M, Holtmann M, Jonsson U, Karande S, Robison JE, Shulman C, Singhal N, Tonge B, Wong VCN, Zwaigenbaum L, Bölte S (2015) Ability and disability in autism spectrum disorder: a systematic literature review employing the International Classification of Functioning, Disability and Health-Children and Youth version. Autism Research 8:782–794CrossRefPubMed De Schipper E, Lundequist A, Coghill D, De Vries PJ, Granlund M, Holtmann M, Jonsson U, Karande S, Robison JE, Shulman C, Singhal N, Tonge B, Wong VCN, Zwaigenbaum L, Bölte S (2015) Ability and disability in autism spectrum disorder: a systematic literature review employing the International Classification of Functioning, Disability and Health-Children and Youth version. Autism Research 8:782–794CrossRefPubMed
23.
go back to reference De Schipper E, Mahdi S, De Vries PJ, Granlund M, Holtmann M, Karande S, Almodayfer O, Shulman C, Tonge B, Wong VV, Zwaigenbaum L, Bölte S (2016) Functioning and disability in autism spectrum disorder: a worldwide survey of experts. Autism Res 9:959–969CrossRefPubMedPubMedCentral De Schipper E, Mahdi S, De Vries PJ, Granlund M, Holtmann M, Karande S, Almodayfer O, Shulman C, Tonge B, Wong VV, Zwaigenbaum L, Bölte S (2016) Functioning and disability in autism spectrum disorder: a worldwide survey of experts. Autism Res 9:959–969CrossRefPubMedPubMedCentral
24.
go back to reference Bölte S, De Schipper E, Holtmann M, Karande S, De Vries PJ, Selb M, Tannock R (2014) Development of ICF Core Sets to standardize assessment of functioning and impairment in ADHD: the path ahead. Eur Child Adolesc Psychiatry 12:1139–1148CrossRef Bölte S, De Schipper E, Holtmann M, Karande S, De Vries PJ, Selb M, Tannock R (2014) Development of ICF Core Sets to standardize assessment of functioning and impairment in ADHD: the path ahead. Eur Child Adolesc Psychiatry 12:1139–1148CrossRef
25.
go back to reference Selb M, Escorpizo R, Kostanjsek N, Stucki G, Üstün B, Cieza A (2015) A guide on how to develop an International Classification of Functioning, Disability and Health Core Set. Eur J Phys Rehabil Med 51:105–117PubMed Selb M, Escorpizo R, Kostanjsek N, Stucki G, Üstün B, Cieza A (2015) A guide on how to develop an International Classification of Functioning, Disability and Health Core Set. Eur J Phys Rehabil Med 51:105–117PubMed
26.
go back to reference Boonen A, van Berkel M, Cieza A, Stucki G, van der Heijde D (2009) Which aspects of functioning are relevant for patients with ankylosing spondylitis: results of focus group interviews. J Rheumatol 36:2501–2511CrossRefPubMed Boonen A, van Berkel M, Cieza A, Stucki G, van der Heijde D (2009) Which aspects of functioning are relevant for patients with ankylosing spondylitis: results of focus group interviews. J Rheumatol 36:2501–2511CrossRefPubMed
27.
go back to reference Coenen M, Basedow-Rajwich B, Konig N, Kesselring J, Cieza A (2011) Functioning and disability in multiple sclerosis from the patient perspective. Chronic Illness 7:291–310CrossRefPubMed Coenen M, Basedow-Rajwich B, Konig N, Kesselring J, Cieza A (2011) Functioning and disability in multiple sclerosis from the patient perspective. Chronic Illness 7:291–310CrossRefPubMed
28.
go back to reference Gradinger F, Kohler B, Khatami R, Mathis J, Cieza A, Bassetti C (2011) Problems in functioning from the patient perspective using the international classification of functioning, disability and health (ICF) as a reference. J Sleep Res 20:171–182CrossRefPubMed Gradinger F, Kohler B, Khatami R, Mathis J, Cieza A, Bassetti C (2011) Problems in functioning from the patient perspective using the international classification of functioning, disability and health (ICF) as a reference. J Sleep Res 20:171–182CrossRefPubMed
29.
go back to reference Granberg S, Pronk M, Swanepoel DW, Kramer SE, Hagsten H, Hjaldahl J, Möller C, Danermark B (2014) The ICF core sets for hearing loss project: functioning and disability from the patient perspective. Int J Audiol 53:777–786CrossRefPubMed Granberg S, Pronk M, Swanepoel DW, Kramer SE, Hagsten H, Hjaldahl J, Möller C, Danermark B (2014) The ICF core sets for hearing loss project: functioning and disability from the patient perspective. Int J Audiol 53:777–786CrossRefPubMed
30.
go back to reference Hinshaw SP, Scheffler RM, Fulton BD, Aase H, Banaschewski T, Cheng W, Mattos P, Holte A, Levy F, Sadeh A, Sergeant JA, Taylor E, Weiss MD (2011) International variation in treatment procedures for ADHD: social context and recent trends. Psychiatr Serv 62:459–464CrossRefPubMed Hinshaw SP, Scheffler RM, Fulton BD, Aase H, Banaschewski T, Cheng W, Mattos P, Holte A, Levy F, Sadeh A, Sergeant JA, Taylor E, Weiss MD (2011) International variation in treatment procedures for ADHD: social context and recent trends. Psychiatr Serv 62:459–464CrossRefPubMed
31.
go back to reference Morgan DL (1998) Planning Focus Groups, vol 2. Sage Publications Inc, Thousand OaksCrossRef Morgan DL (1998) Planning Focus Groups, vol 2. Sage Publications Inc, Thousand OaksCrossRef
32.
go back to reference Krippendorff K (2013) Content analysis: an introduction to its methodology, 3rd edn. Sage Publications Inc, London Krippendorff K (2013) Content analysis: an introduction to its methodology, 3rd edn. Sage Publications Inc, London
33.
go back to reference Cieza A, Brockow T, Ewert T, Amman E, Kollerits B, Chatterji S, Üstün B, Stucki G (2002) Linking health-status measurements to the International Classification of Functioning, Disability and Health. J Rehabil Med 34:205–210CrossRefPubMed Cieza A, Brockow T, Ewert T, Amman E, Kollerits B, Chatterji S, Üstün B, Stucki G (2002) Linking health-status measurements to the International Classification of Functioning, Disability and Health. J Rehabil Med 34:205–210CrossRefPubMed
34.
go back to reference Bowen GA (2008) Naturalistic inquiry and the saturation concept: a research note. Qual Res 8:137–152CrossRef Bowen GA (2008) Naturalistic inquiry and the saturation concept: a research note. Qual Res 8:137–152CrossRef
35.
go back to reference De Schipper E, Lundequist A, Löfgren-Wilteus A, Coghill D, de Vries PJ, Granlund M, Holtmann M, Jonsson U, Karande S, Levy F, Al-Modayfer O, Rohde L, Tannock R, Tonge B, Bölte S (2015) A comprehensive scoping review of ability and disability in ADHD using the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY). Eur Child Adolesc Psychiatry 24:859–872CrossRefPubMed De Schipper E, Lundequist A, Löfgren-Wilteus A, Coghill D, de Vries PJ, Granlund M, Holtmann M, Jonsson U, Karande S, Levy F, Al-Modayfer O, Rohde L, Tannock R, Tonge B, Bölte S (2015) A comprehensive scoping review of ability and disability in ADHD using the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY). Eur Child Adolesc Psychiatry 24:859–872CrossRefPubMed
36.
go back to reference Wehmeier PM, Schacht A, Barkley RA (2010) Social and emotional impairment in children and adolescents with ADHD and the impact on quality of life. J Adolesc Health 46:209–217CrossRefPubMed Wehmeier PM, Schacht A, Barkley RA (2010) Social and emotional impairment in children and adolescents with ADHD and the impact on quality of life. J Adolesc Health 46:209–217CrossRefPubMed
Metadata
Title
An international qualitative study of ability and disability in ADHD using the WHO-ICF framework
Authors
Soheil Mahdi
Marisa Viljoen
Rafael Massuti
Melissa Selb
Omar Almodayfer
Sunil Karande
Petrus J. de Vries
Luis Rohde
Sven Bölte
Publication date
01-10-2017
Publisher
Springer Berlin Heidelberg
Published in
European Child & Adolescent Psychiatry / Issue 10/2017
Print ISSN: 1018-8827
Electronic ISSN: 1435-165X
DOI
https://doi.org/10.1007/s00787-017-0983-1

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