Functioning and Disability in Autism Spectrum Disorder: A Worldwide Survey of Experts

被引:86
作者
de Schipper, Elles [1 ,2 ]
Mahdi, Soheil [1 ,2 ]
de Vries, Petrus [3 ]
Granlund, Mats [4 ]
Holtmann, Martin [5 ]
Karande, Sunil [6 ]
Almodayfer, Omar [7 ]
Shulman, Cory [8 ]
Tonge, Bruce [9 ]
Wong, Virginia V. C. N. [10 ]
Zwaigenbaum, Lonnie [11 ]
Bolte, Sven [1 ,2 ]
机构
[1] Karolinska Inst, Pediat Neuropsychiatry Unit, Ctr Neurodev Disorders KIND, Dept Womens & Childrens Hlth, Stockholm, Sweden
[2] Stockholm Cty Council, Ctr Psychiat Res, Child & Adolescent Psychiat, Stockholm, Sweden
[3] Univ Cape Town, Div Child & Adolescent Psychiat, Cape Town, South Africa
[4] Jonkoping Univ, SIDR, CHILD, Jonkoping, Sweden
[5] Ruhr Univ Bochum, LWL Univ Hosp Child & Adolescent Psychiat, Hamm, Germany
[6] Seth GS Med Coll & KEM Hosp, Learning Disabil Clin, Dept Pediat, Mumbai, Maharashtra, India
[7] King Abdul Aziz Med City, Coll Med, Psychiat Sect, Riyadh, Saudi Arabia
[8] Hebrew Univ Jerusalem, Paul Baerwald Sch Social Work & Social Welf, Jerusalem, Israel
[9] Monash Univ, Ctr Dev Psychiat & Psychol, Melbourne, Vic, Australia
[10] Univ Hong Kong, Dept Paediat & Adolescent Med, Hong Kong, Hong Kong, Peoples R China
[11] Univ Alberta, Dept Pediat, Edmonton, AB, Canada
基金
瑞典研究理事会;
关键词
autism; neurodevelopmental disorder; assessment; child psychiatry; heterogeneity; quality of life; ICF CORE SETS; INTERNATIONAL CLASSIFICATION; BEHAVIOR DOMAINS; SEX-DIFFERENCES; IMPAIRMENT; ADULTS; ADHD;
D O I
10.1002/aur.1592
中图分类号
B84 [心理学]; C [社会科学总论]; Q98 [人类学];
学科分类号
03 ; 0303 ; 030303 ; 04 ; 0402 ;
摘要
Objective: This study is the second of four to prepare International Classification of Functioning, Disability and Health (ICF; and Children and Youth version, ICF(-CY)) Core Sets for Autism Spectrum Disorder (ASD). The objective of this study was to survey the opinions and experiences of international experts on functioning and disability in ASD. Methods: Using a protocol stipulated by the World Health Organization (WHO) and monitored by the ICF Research Branch, an email-based questionnaire was circulated worldwide among ASD experts, and meaningful functional ability and disability concepts were extracted from their responses. These concepts were then linked to the ICF(-CY) by two independent researchers using a standardized linking procedure. Results: N5225 experts from 10 different disciplines and all six WHO-regions completed the survey. Meaningful concepts from the responses were linked to 210 ICF(-CY) categories. Of these, 103 categories were considered most relevant to ASD (i.e., identified by at least 5% of the experts), of which 37 were related to Activities and Participation, 35 to Body functions, 22 to Environmental factors, and 9 to Body structures. A variety of personal characteristics and ASD-related functioning skills were provided by experts, including honesty, loyalty, attention to detail and creative talents. Reported gender differences in ASD comprised more externalizing behaviors among males and more internalizing behaviors in females. Conclusion: The ICF(-CY) categories derived from international expert opinions indicate that the impact of ASD on functioning extends far beyond core symptom domains. (C) 2016 The Authors Autism Research published by Wiley Periodicals, Inc. on behalf of International Society for Autism Research
引用
收藏
页码:959 / 969
页数:11
相关论文
共 30 条
[1]  
American Psychiatric Association, 2013, Diagnostic and Statistical Manual of Mental Disorders: DSM-5, V5th ed, DOI 10.1176/appi.books.9780890425596
[2]   The ICF and its meaning for child and adolescent psychiatry [J].
Boelte, Sven .
ZEITSCHRIFT FUR KINDER-UND JUGENDPSYCHIATRIE UND PSYCHOTHERAPIE, 2009, 37 (06) :495-497
[3]   The relation between general cognitive level and adaptive behavior domains in individuals with autism with and without co-morbid mental retardation [J].
Bölte, S ;
Poustka, F .
CHILD PSYCHIATRY & HUMAN DEVELOPMENT, 2002, 33 (02) :165-172
[4]   Development of ICF Core Sets to standardize assessment of functioning and impairment in ADHD: the path ahead [J].
Bolte, Sven ;
de Schipper, Elles ;
Holtmann, Martin ;
Karande, Sunil ;
de Vries, Petrus J. ;
Selb, Melissa ;
Tannock, Rosemary .
EUROPEAN CHILD & ADOLESCENT PSYCHIATRY, 2014, 23 (12) :1139-1148
[5]   Classification of Functioning and Impairment: The Development of ICF Core Sets for Autism Spectrum Disorder [J].
Bolte, Sven ;
de Schipper, Elles ;
Robison, John E. ;
Wong, Virginia C. N. ;
Selb, Melissa ;
Singhal, Nidhi ;
de Vries, Petrus J. ;
Zwaigenbaum, Lonnie .
AUTISM RESEARCH, 2014, 7 (01) :167-172
[6]   Sex differences in cognitive domains and their clinical correlates in higher-functioning autism spectrum disorders [J].
Bolte, Sven ;
Duketis, Eftichia ;
Poustka, Fritz ;
Holtmann, Martin .
AUTISM, 2011, 15 (04) :497-511
[7]   Exploring the 'fractionation' of autism at the cognitive level [J].
Brunsdon, Victoria E. A. ;
Happe, Francesca .
AUTISM, 2014, 18 (01) :17-30
[8]   Icf linking rules:: An update based on lessons learned [J].
Cieza, A ;
Geyh, S ;
Chatterji, S ;
Kostanjsek, N ;
Üstün, B ;
Stucki, G .
JOURNAL OF REHABILITATION MEDICINE, 2005, 37 (04) :212-218
[9]   Linking health-status measurements to the international classification of functioning, disability and health [J].
Cieza, A ;
Brockow, T ;
Ewert, T ;
Amman, E ;
Kollerits, B ;
Chatterji, S ;
Üstün, TB ;
Stucki, G .
JOURNAL OF REHABILITATION MEDICINE, 2002, 34 (05) :205-210
[10]   The development of ICF Core Sets for multiple sclerosis: results of the International Consensus Conference [J].
Coenen, Michaela ;
Cieza, Alarcos ;
Freeman, Jenny ;
Khan, Fary ;
Miller, Deborah ;
Weise, Andrea ;
Kesselring, Jurg .
JOURNAL OF NEUROLOGY, 2011, 258 (08) :1477-1488