Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version / Elles DE SCHIPPER in Autism Research, 8-6 (December 2015)  

Public ISBD [article]  inAutism Research > 8-6 (December 2015) . - p.782-794 Titre : Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version Type de document : Texte imprimé et/ou numérique Auteurs : Elles DE SCHIPPER, Auteur ; Aiko LUNDEQUIST, Auteur ; David COGHILL, Auteur ; Petrus J. DE VRIES, Auteur ; Mats GRANLUND, Auteur ; Martin HOLTMANN, Auteur ; Ulf JONSSON, Auteur ; Sunil KARANDE, Auteur ; John Elder ROBISON, Auteur ; Cory SHULMAN, Auteur ; Nidhi SINGHAL, Auteur ; Bruce TONGE, Auteur ; Virginia C.N. WONG, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Sven BÖLTE, Auteur Article en page(s) : p.782-794 Langues : Anglais (eng) Mots-clés : neurodevelopmental disorder  assessment  child psychiatry  diagnostics  International Classification of Diseases  Diagnostic and Statistical Manual of Mental Disorders  autism Index. décimale : PER Périodiques Résumé : 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. Autism Res 2015, 8: 782–794. © 2015 The Authors Autism Research published by Wiley Periodicals, Inc. on behalf of International Society for Autism Research En ligne : http://dx.doi.org/10.1002/aur.1485 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278 [article] Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version [Texte imprimé et/ou numérique] / Elles DE SCHIPPER, Auteur ; Aiko LUNDEQUIST, Auteur ; David COGHILL, Auteur ; Petrus J. DE VRIES, Auteur ; Mats GRANLUND, Auteur ; Martin HOLTMANN, Auteur ; Ulf JONSSON, Auteur ; Sunil KARANDE, Auteur ; John Elder ROBISON, Auteur ; Cory SHULMAN, Auteur ; Nidhi SINGHAL, Auteur ; Bruce TONGE, Auteur ; Virginia C.N. WONG, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Sven BÖLTE, Auteur . - p.782-794. Langues : Anglais (eng) in Autism Research > 8-6 (December 2015) . - p.782-794 Mots-clés : neurodevelopmental disorder  assessment  child psychiatry  diagnostics  International Classification of Diseases  Diagnostic and Statistical Manual of Mental Disorders  autism Index. décimale : PER Périodiques Résumé : 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. Autism Res 2015, 8: 782–794. © 2015 The Authors Autism Research published by Wiley Periodicals, Inc. on behalf of International Society for Autism Research En ligne : http://dx.doi.org/10.1002/aur.1485 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278

Annual Research Review: Quality of life and childhood mental and behavioural disorders – a critical review of the research / Ulf JONSSON in Journal of Child Psychology and Psychiatry, 58-4 (April 2017)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 58-4 (April 2017) . - p.439-469 Titre : Annual Research Review: Quality of life and childhood mental and behavioural disorders – a critical review of the research Type de document : Texte imprimé et/ou numérique Auteurs : Ulf JONSSON, Auteur ; Iman ALAIE, Auteur ; Anna LÖFGREN WILTEUS, Auteur ; Eric ZANDER, Auteur ; Peter B. MARSCHIK, Auteur ; David COGHILL, Auteur ; Sven BÖLTE, Auteur Article en page(s) : p.439-469 Langues : Anglais (eng) Mots-clés : Quality of life  psychopathology  mental health  adolescence Index. décimale : PER Périodiques Résumé : Background An individual's subjective perception of well-being is increasingly recognized as an essential complement to clinical symptomatology and functional impairment in children's mental health. Measurement of quality of life (QoL) has the potential to give due weight to the child's perspective. Scope and methodology Our aim was to critically review the current evidence on how childhood mental disorders affect QoL. First, the major challenges in this research field are outlined. Then we present a systematic review of QoL in children and adolescents aged 0–18 years formally diagnosed with a mental and behavioural disorder, as compared to healthy or typically developing children or children with other health conditions. Finally, we discuss limitations of the current evidence base and future directions based on the results of the systematic review and other relevant literature. Findings and conclusions The systematic review identified 41 eligible studies. All were published after the year 2000 and 21 originated in Europe. The majority examined QoL in neurodevelopmental disorders, including attention-deficit hyperactivity disorder (k = 17), autism spectrum disorder (k = 6), motor disorders (k = 5) and intellectual disability (k = 4). Despite substantial heterogeneity, studies demonstrate that self-reported global QoL is significantly reduced compared to typical/healthy controls across several disorders and QoL dimensions. Parents’ ratings were on average substantially lower, casting doubt on the validity of proxy-report. Studies for large diagnostic groups such as depressive disorders, anxiety disorders, (early onset) schizophrenia and eating disorders are largely lacking. We conclude that representative, well-characterized normative and clinical samples as well as longitudinal and qualitative designs are needed to further clarify the construct of QoL, to derive measures of high ecological validity, and to examine how QoL fluctuates over time and is attributable to specific conditions or contextual factors. En ligne : http://dx.doi.org/10.1111/jcpp.12645 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305 [article] Annual Research Review: Quality of life and childhood mental and behavioural disorders – a critical review of the research [Texte imprimé et/ou numérique] / Ulf JONSSON, Auteur ; Iman ALAIE, Auteur ; Anna LÖFGREN WILTEUS, Auteur ; Eric ZANDER, Auteur ; Peter B. MARSCHIK, Auteur ; David COGHILL, Auteur ; Sven BÖLTE, Auteur . - p.439-469. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 58-4 (April 2017) . - p.439-469 Mots-clés : Quality of life  psychopathology  mental health  adolescence Index. décimale : PER Périodiques Résumé : Background An individual's subjective perception of well-being is increasingly recognized as an essential complement to clinical symptomatology and functional impairment in children's mental health. Measurement of quality of life (QoL) has the potential to give due weight to the child's perspective. Scope and methodology Our aim was to critically review the current evidence on how childhood mental disorders affect QoL. First, the major challenges in this research field are outlined. Then we present a systematic review of QoL in children and adolescents aged 0–18 years formally diagnosed with a mental and behavioural disorder, as compared to healthy or typically developing children or children with other health conditions. Finally, we discuss limitations of the current evidence base and future directions based on the results of the systematic review and other relevant literature. Findings and conclusions The systematic review identified 41 eligible studies. All were published after the year 2000 and 21 originated in Europe. The majority examined QoL in neurodevelopmental disorders, including attention-deficit hyperactivity disorder (k = 17), autism spectrum disorder (k = 6), motor disorders (k = 5) and intellectual disability (k = 4). Despite substantial heterogeneity, studies demonstrate that self-reported global QoL is significantly reduced compared to typical/healthy controls across several disorders and QoL dimensions. Parents’ ratings were on average substantially lower, casting doubt on the validity of proxy-report. Studies for large diagnostic groups such as depressive disorders, anxiety disorders, (early onset) schizophrenia and eating disorders are largely lacking. We conclude that representative, well-characterized normative and clinical samples as well as longitudinal and qualitative designs are needed to further clarify the construct of QoL, to derive measures of high ecological validity, and to examine how QoL fluctuates over time and is attributable to specific conditions or contextual factors. En ligne : http://dx.doi.org/10.1111/jcpp.12645 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305

Can findings from randomized controlled trials of social skills training in autism spectrum disorder be generalized? The neglected dimension of external validity / Ulf JONSSON in Autism, 20-3 (April 2016)  

Public ISBD [article]  inAutism > 20-3 (April 2016) . - p.295-305 Titre : Can findings from randomized controlled trials of social skills training in autism spectrum disorder be generalized? The neglected dimension of external validity Type de document : Texte imprimé et/ou numérique Auteurs : Ulf JONSSON, Auteur ; Nora CHOQUE OLSSON, Auteur ; Sven BÖLTE, Auteur Article en page(s) : p.295-305 Langues : Anglais (eng) Mots-clés : child psychiatry  evidence-based methods  neurodevelopmental disorders  systematic review Index. décimale : PER Périodiques Résumé : Systematic reviews have traditionally focused on internal validity, while external validity often has been overlooked. In this study, we systematically reviewed determinants of external validity in the accumulated randomized controlled trials of social skills group interventions for children and adolescents with autism spectrum disorder. We extracted data clustered into six overarching themes: source population, included population, context, treatment provider, treatment intervention, and outcome. A total of 15 eligible randomized controlled trials were identified. The eligible population was typically limited to high-functioning school-aged children with autism spectrum disorder, and the included population was predominantly male and Caucasian. Scant information about the recruitment of participants was provided, and details about treatment providers and settings were sparse. It was not evident from the trials to what extent acquired social skills were enacted in everyday life and maintained over time. We conclude that the generalizability of the accumulated evidence is unclear and that the determinants of external validity are often inadequately reported. At this point, more effectiveness-oriented randomized controlled trials of equally high internal and external validity are needed. More attention to the determinants of external validity is warranted when this new generation of randomized controlled trials are planned and reported. We provide a tentative checklist for this purpose. En ligne : http://dx.doi.org/10.1177/1362361315583817 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=285 [article] Can findings from randomized controlled trials of social skills training in autism spectrum disorder be generalized? The neglected dimension of external validity [Texte imprimé et/ou numérique] / Ulf JONSSON, Auteur ; Nora CHOQUE OLSSON, Auteur ; Sven BÖLTE, Auteur . - p.295-305. Langues : Anglais (eng) in Autism > 20-3 (April 2016) . - p.295-305 Mots-clés : child psychiatry  evidence-based methods  neurodevelopmental disorders  systematic review Index. décimale : PER Périodiques Résumé : Systematic reviews have traditionally focused on internal validity, while external validity often has been overlooked. In this study, we systematically reviewed determinants of external validity in the accumulated randomized controlled trials of social skills group interventions for children and adolescents with autism spectrum disorder. We extracted data clustered into six overarching themes: source population, included population, context, treatment provider, treatment intervention, and outcome. A total of 15 eligible randomized controlled trials were identified. The eligible population was typically limited to high-functioning school-aged children with autism spectrum disorder, and the included population was predominantly male and Caucasian. Scant information about the recruitment of participants was provided, and details about treatment providers and settings were sparse. It was not evident from the trials to what extent acquired social skills were enacted in everyday life and maintained over time. We conclude that the generalizability of the accumulated evidence is unclear and that the determinants of external validity are often inadequately reported. At this point, more effectiveness-oriented randomized controlled trials of equally high internal and external validity are needed. More attention to the determinants of external validity is warranted when this new generation of randomized controlled trials are planned and reported. We provide a tentative checklist for this purpose. En ligne : http://dx.doi.org/10.1177/1362361315583817 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=285

Early environmental risk factors for neurodevelopmental disorders – a systematic review of twin and sibling studies / Torkel CARLSSON in Development and Psychopathology, 33-4 (October 2021)  

Public ISBD [article]  inDevelopment and Psychopathology > 33-4 (October 2021) . - p.1448-1495 Titre : Early environmental risk factors for neurodevelopmental disorders – a systematic review of twin and sibling studies Type de document : Texte imprimé et/ou numérique Auteurs : Torkel CARLSSON, Auteur ; Felix MOLANDER, Auteur ; Mark J. TAYLOR, Auteur ; Ulf JONSSON, Auteur ; Sven BÖLTE, Auteur Article en page(s) : p.1448-1495 Langues : Anglais (eng) Mots-clés : confounding factors  environmental exposure  neurodevelopmental disorders  systematic review  twin and sibling studies Index. décimale : PER Périodiques Résumé : While neurodevelopmental disorders (NDDs) are highly heritable, several environmental risk factors have also been suggested. However, the role of familial confounding is unclear. To shed more light on this, we reviewed the evidence from twin and sibling studies. A systematic review was performed on case control and cohort studies including a twin or sibling within-pair comparison of neurodevelopmental outcomes, with environmental exposures until the sixth birthday. From 7,315 screened abstracts, 140 eligible articles were identified. After adjustment for familial confounding advanced paternal age, low birth weight, birth defects, and perinatal hypoxia and respiratory stress were associated with autism spectrum disorder (ASD), and low birth weight, gestational age and family income were associated with attention-deficit/hyperactivity disorder (ADHD), categorically and dimensionally. Several previously suspected factors, including pregnancy-related factors, were deemed due to familial confounding. Most studies were conducted in North America and Scandinavia, pointing to a global research bias. Moreover, most studies focused on ASD and ADHD. This genetically informed review showed evidence for a range of environmental factors of potential casual significance in NDDs, but also points to a critical need of more genetically informed studies of good quality in the quest of the environmental causes of NDDs. En ligne : http://dx.doi.org/10.1017/S0954579420000620 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=457 [article] Early environmental risk factors for neurodevelopmental disorders – a systematic review of twin and sibling studies [Texte imprimé et/ou numérique] / Torkel CARLSSON, Auteur ; Felix MOLANDER, Auteur ; Mark J. TAYLOR, Auteur ; Ulf JONSSON, Auteur ; Sven BÖLTE, Auteur . - p.1448-1495. Langues : Anglais (eng) in Development and Psychopathology > 33-4 (October 2021) . - p.1448-1495 Mots-clés : confounding factors  environmental exposure  neurodevelopmental disorders  systematic review  twin and sibling studies Index. décimale : PER Périodiques Résumé : While neurodevelopmental disorders (NDDs) are highly heritable, several environmental risk factors have also been suggested. However, the role of familial confounding is unclear. To shed more light on this, we reviewed the evidence from twin and sibling studies. A systematic review was performed on case control and cohort studies including a twin or sibling within-pair comparison of neurodevelopmental outcomes, with environmental exposures until the sixth birthday. From 7,315 screened abstracts, 140 eligible articles were identified. After adjustment for familial confounding advanced paternal age, low birth weight, birth defects, and perinatal hypoxia and respiratory stress were associated with autism spectrum disorder (ASD), and low birth weight, gestational age and family income were associated with attention-deficit/hyperactivity disorder (ADHD), categorically and dimensionally. Several previously suspected factors, including pregnancy-related factors, were deemed due to familial confounding. Most studies were conducted in North America and Scandinavia, pointing to a global research bias. Moreover, most studies focused on ASD and ADHD. This genetically informed review showed evidence for a range of environmental factors of potential casual significance in NDDs, but also points to a critical need of more genetically informed studies of good quality in the quest of the environmental causes of NDDs. En ligne : http://dx.doi.org/10.1017/S0954579420000620 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=457

Neurological disorders in autism: A systematic review and meta-analysis / Pei-Yin PAN in Autism, 25-3 (April 2021)  

Public ISBD [article]  inAutism > 25-3 (April 2021) . - p.812-830 Titre : Neurological disorders in autism: A systematic review and meta-analysis Type de document : Texte imprimé et/ou numérique Auteurs : Pei-Yin PAN, Auteur ; Sven BÖLTE, Auteur ; Preet KAUR, Auteur ; Sadia JAMIL, Auteur ; Ulf JONSSON, Auteur Article en page(s) : p.812-830 Langues : Anglais (eng) Mots-clés : Adhd  autism  comorbidity  meta-analysis  neurology  prevalence Index. décimale : PER Périodiques Résumé : Neurological disorders, such as epilepsy and cerebral palsy, have been reported to occur among individuals with autism beyond chance and may have an impact on daily living across the lifespan. Although there has been research investigating neurological disorders in autism, the findings are not always conclusive. Previous summaries of existing studies have not evaluated the full range of neurological disorders. This study aimed to comprehensively explore the neurological problems appearing in autism to provide updated information that is needed for better healthcare and support in this population. We looked at already published studies focusing on risk or frequency of neurological disorders in autism. Our results suggest that individuals with autism are more likely than the general population to have a range of neurological disorders, including epilepsy, macrocephaly, hydrocephalus, cerebral palsy, migraine/headache, and inborn abnormalities of the nervous system. In order to provide individualized healthcare and support of high quality to individuals diagnosed with autism, health care professionals and other support providers need to be attentive to neurological complications. To further improve our understanding about the link between autism and neurological disorders, future research should follow the neurological health of children who are diagnosed with or are at increased likelihood of autism. En ligne : http://dx.doi.org/10.1177/1362361320951370 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 [article] Neurological disorders in autism: A systematic review and meta-analysis [Texte imprimé et/ou numérique] / Pei-Yin PAN, Auteur ; Sven BÖLTE, Auteur ; Preet KAUR, Auteur ; Sadia JAMIL, Auteur ; Ulf JONSSON, Auteur . - p.812-830. Langues : Anglais (eng) in Autism > 25-3 (April 2021) . - p.812-830 Mots-clés : Adhd  autism  comorbidity  meta-analysis  neurology  prevalence Index. décimale : PER Périodiques Résumé : Neurological disorders, such as epilepsy and cerebral palsy, have been reported to occur among individuals with autism beyond chance and may have an impact on daily living across the lifespan. Although there has been research investigating neurological disorders in autism, the findings are not always conclusive. Previous summaries of existing studies have not evaluated the full range of neurological disorders. This study aimed to comprehensively explore the neurological problems appearing in autism to provide updated information that is needed for better healthcare and support in this population. We looked at already published studies focusing on risk or frequency of neurological disorders in autism. Our results suggest that individuals with autism are more likely than the general population to have a range of neurological disorders, including epilepsy, macrocephaly, hydrocephalus, cerebral palsy, migraine/headache, and inborn abnormalities of the nervous system. In order to provide individualized healthcare and support of high quality to individuals diagnosed with autism, health care professionals and other support providers need to be attentive to neurological complications. To further improve our understanding about the link between autism and neurological disorders, future research should follow the neurological health of children who are diagnosed with or are at increased likelihood of autism. En ligne : http://dx.doi.org/10.1177/1362361320951370 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444

Rare variants in the outcome of social skills group training for autism / Danyang LI in Autism Research, 15-3 (March 2022)  

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School absenteeism in autistic children and adolescents: A scoping review / Maud PALMGREN ; Anna LINDBLADH ; Sven BÖLTE ; Ulf JONSSON in Autism, 28-7 (July 2024)  

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Support in Daily Living for Young Adults with Neurodevelopmental Conditions in Sweden: A Qualitative Description of Current Practice / Tatja HIRVIKOSKI ; Sonya GIRDLER ; Sven BÖLTE ; Ulf JONSSON in Journal of Autism and Developmental Disorders, 54-8 (August 2024)  

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