Dataset Information

Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version.

ABSTRACT:

Objective

This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span).

Methods

Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached.

Results

Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%).

Conclusion

The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD--both with respect to disability and exceptionality--and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD.

SUBMITTER: de Schipper E

PROVIDER: S-EPMC6680328 | biostudies-literature | 2015 Dec

REPOSITORIES: biostudies-literature

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Publications

Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version.

de Schipper Elles E Lundequist Aiko A Coghill David D de Vries Petrus J PJ Granlund Mats M Holtmann Martin M Jonsson Ulf U Karande Sunil S Robison John E JE Shulman Cory C Singhal Nidhi N Tonge Bruce B Wong Virginia C N VC Zwaigenbaum Lonnie L Bölte Sven S

Autism research : official journal of the International Society for Autism Research 20150328 6

<h4>Objective</h4>This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span).<h4>Methods</h4>Syst ...[more]

PMID: 25820780

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Project description:This is the third in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The present study aimed to describe functioning in ASD (as operationalized by the ICF) derived from the perspectives of diagnosed individuals, family members, and professionals. A qualitative study using focus groups and semi-structured interviews were conducted with 19 stakeholder groups (N = 90) from Canada, India, Saudi Arabia, South Africa, and Sweden. Meaningful concepts from the focus groups and individual interviews were linked to ICF categories using a deductive qualitative approach with standardized linking procedures. The deductive qualitative content analysis yielded meaningful functioning concepts that were linked to 110 ICF categories across all four ICF components. Broad variation of environmental factors and activities and participation categories were identified in this study, while body functions consisted mainly of mental functions. Body structures were sparsely mentioned by the participants. Positive aspects of ASD included honesty, attention to detail, and memory. The experiences provided by international stakeholders support the need to understand individuals with ASD in a broader perspective, extending beyond diagnostic criteria into many areas of functioning and environmental domains. This study is part of a larger systematic effort that will provide the basis to define ICF Core Sets for ASD, from which assessment tools can be generated for use in clinical practice, research, and health care policy making. Autism Res 2018, 11: 463-475. © 2017 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc.Lay summaryThe study findings support the need to understand the living experiences of individuals with Autism Spectrum Disorder (ASD) from a broader perspective, taking into account many areas of an individual's functioning and environment. The ICF can serve as foundation for exploring these living experiences more extensively by offering tools that enable wide variety of individual difficulties and strengths to be captured along with important environmental influences. As such, these tools can facilitate interventions that meet the needs and goals of the individual.

Project description:BackgroundThe concept of participation is recognized as an important rehabilitation outcome and instruments have been developed to measure participation using the International Classification of Functioning, Disability and Health (ICF). To date, few studies have examined the content of these instruments to determine how participation has been operationalized. The purpose of this study was to compare the content of participation instruments using the ICF classification.MethodsA systematic literature search was conducted to identify instruments that assess participation according to the ICF. Instruments were considered to assess participation and were included if the domains contain content from a minimum of three ICF chapters ranging from Chapter 3 Communication to Chapter 9 Community, social and civic life in the activities and participation component. The instrument content was examined by first identifying the meaningful concepts in each question and then linking these concepts to ICF categories. The content analysis included reporting the 1) ICF chapters (domains) covered in the activities and participation component, 2) relevance of the meaningful concepts to the activities and participation component and 3) context in which the activities and participation component categories are evaluated.ResultsEight instruments were included: Impact on Participation and Autonomy, Keele Assessment of Participation, Participation Survey/Mobility, Participation Measure-Post Acute Care, Participation Objective Participation Subjective, Participation Scale (P-Scale), Rating of Perceived Participation and World Health Organization Disability Assessment Schedule II (WHODAS II). 1351 meaningful concepts were identified in the eight instruments. There are differences among the instruments regarding how participation is operationalized. All the instruments cover six to eight of the nine chapters in the activities and participation component. The P-Scale and WHODAS II have questions which do not contain any meaningful concepts related to the activities and participation component. Differences were also observed in how other ICF components (body functions, environmental factors) and health are operationalized in the instruments.ConclusionLinking the meaningful concepts in the participation instruments to the ICF classification provided an objective and comprehensive method for analyzing the content. The content analysis revealed differences in how the concept of participation is operationalized and these differences should be considered when selecting an instrument.

Project description:BackgroundShoulder pain is a common condition with prevalence estimates of 7-26% and the associated disability is multi-faceted. For functional assessments in clinic and research, a number of condition-specific and generic measures are available. With the approval of the ICF, a system is now available for the analysis of health status measures. The aims of this systematic literature review were to identify the most frequently addressed aspects of functioning in assessments of shoulder pain and provide an overview of the content of frequently used measures.MethodsMeaningful concepts of the identified measures were extracted and linked to the most precise ICF categories. Second-level categories with a relative frequency above 1% and the content of measures with at least 5 citations were reported.ResultsA set of 40?second-level ICF categories were identified in 370 single-item measures and 105 multi-item measures, of these, 28 belonged to activities and participation, 11 to body functions and structures and 1 to environmental factors. The most frequently addressed concepts were: pain; movement-related body functions and structures; sleep, hand and arm use, self-care, household tasks, work and employment, and leisure. Concepts of psycho-social functions and environmental factors were less frequently included. The content overview of commonly used condition-specific and generic measures displayed large variations in the number of included concepts. The most wide-ranging measures, the DASH and ASES were linked to 23 and 16?second-level ICF categories, respectively, whereas the Constant were linked to 7 categories and the SST and the SPADI to 6 categories each.ConclusionsThis systematic review displayed that measures used for shoulder pain included more than twice as many concepts of activities and participation than concepts of body functions and structures. Environmental factors were scarcely addressed. The huge differences in the content of the condition-specific multi-item measures demonstrates the importance of clarifying the content to select the most appropriate measure both in research and in clinical work. For clinical situations, we propose use of a wide-ranging condition-specific measure that conceptualizes assessments of shoulder pain from a bio-psycho-social perspective. Further research is needed to assess how patient-reported problems in functioning are captured in the commonly used measures.

Dataset Information

Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version.

Objective

Methods

Results

Conclusion

Publications

Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version.

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