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Brief Report: Do Service Dog Providers Placing Dogs with Children with Developmental Disabilities Use Outcome Measures and, If So, What Are they? / Felicity Ruth BUTTERLY in Journal of Autism and Developmental Disorders, 43-11 (November 2013)
[article]
Titre : Brief Report: Do Service Dog Providers Placing Dogs with Children with Developmental Disabilities Use Outcome Measures and, If So, What Are they? Type de document : Texte imprimé et/ou numérique Auteurs : Felicity Ruth BUTTERLY, Auteur ; Carol PERCY, Auteur ; Gillian WARD, Auteur Article en page(s) : p.2720-2725 Langues : Anglais (eng) Mots-clés : Assistance Dogs Service providers Outcome measures Developmental disability Index. décimale : PER Périodiques Résumé : The aim of this study was to identify the outcomes expected and assessed by those providing service dogs to children with developmental disabilities. Seventeen registered service dog providers were invited to complete a mixed methods online survey. Five providers, who prepared dogs to work with a wide range of conditions and behaviours, mainly Asperger’s syndrome, autism and communication disorders, completed the survey. All five participants reported that they expected to see positive changes as a consequence of the service dog placement, in both the recipient child and their family, including improvements in attention span and language skills, as well as increased familial cohesion. Survey responses indicated that not all desired outcomes were routinely assessed. The range of assessments used were interviews, intake conversations, pre-placement questionnaires, child social dairies filled in by parents, follow up surveys after placement, and child observation by parents. No specifically named valid and reliable clinical or research measures were referred to, showing an emphasis on assessments from parents and service dog providers. It is not clear whether pre-intervention assessments are repeated systematically at follow-up, which could show robust intervention effects. There is scope for professionals in developmental disability to work with service dog providers to improve the evidence base in this field. En ligne : http://dx.doi.org/10.1007/s10803-013-1803-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=217
in Journal of Autism and Developmental Disorders > 43-11 (November 2013) . - p.2720-2725[article] Brief Report: Do Service Dog Providers Placing Dogs with Children with Developmental Disabilities Use Outcome Measures and, If So, What Are they? [Texte imprimé et/ou numérique] / Felicity Ruth BUTTERLY, Auteur ; Carol PERCY, Auteur ; Gillian WARD, Auteur . - p.2720-2725.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 43-11 (November 2013) . - p.2720-2725
Mots-clés : Assistance Dogs Service providers Outcome measures Developmental disability Index. décimale : PER Périodiques Résumé : The aim of this study was to identify the outcomes expected and assessed by those providing service dogs to children with developmental disabilities. Seventeen registered service dog providers were invited to complete a mixed methods online survey. Five providers, who prepared dogs to work with a wide range of conditions and behaviours, mainly Asperger’s syndrome, autism and communication disorders, completed the survey. All five participants reported that they expected to see positive changes as a consequence of the service dog placement, in both the recipient child and their family, including improvements in attention span and language skills, as well as increased familial cohesion. Survey responses indicated that not all desired outcomes were routinely assessed. The range of assessments used were interviews, intake conversations, pre-placement questionnaires, child social dairies filled in by parents, follow up surveys after placement, and child observation by parents. No specifically named valid and reliable clinical or research measures were referred to, showing an emphasis on assessments from parents and service dog providers. It is not clear whether pre-intervention assessments are repeated systematically at follow-up, which could show robust intervention effects. There is scope for professionals in developmental disability to work with service dog providers to improve the evidence base in this field. En ligne : http://dx.doi.org/10.1007/s10803-013-1803-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=217 Relations between specific and global outcome measures in a social-communication intervention for children with autism spectrum disorder / Anders NORDAHL-HANSEN in Research in Autism Spectrum Disorders, 29-30 (September–October 2016)
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Titre : Relations between specific and global outcome measures in a social-communication intervention for children with autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Anders NORDAHL-HANSEN, Auteur ; Sue FLETCHER-WATSON, Auteur ; Helen MCCONACHIE, Auteur ; Anett KAALE, Auteur Article en page(s) : p.19-29 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders Social communication Treatment Intervention Outcome measures Brief observation of social communication change (BOSCC) Children Joint engagement Index. décimale : PER Périodiques Résumé : Abstract Assessment of relevant outcomes is a key challenge in evaluating effects of social-communication interventions. However, few studies have investigated in what ways specific and more global measures may influence reported results of social-communication interventions for children with autism spectrum disorder (ASD). In this study both a specific and a global, more global autism symptom measure were used to assess effects of a brief social-communication intervention. Fifty-nine children (2–4 years) diagnosed with autistic disorder were assessed with the Joint Engagement (JE) states coding procedure and a preliminary version of the Brief Observation of Social Communication Change (BOSCC). A statistically significant difference was found between intervention and control groups from baseline to intervention endpoint on JE but not on BOSCC. Degree of change on the measures was moderately related, and both were independent of language level and non-verbal mental age. This study adds to the knowledge of what may be expected of different outcome measures and provides suggestions to how measures may be deployed to investigate underlying mechanisms and developmental pathways. En ligne : http://dx.doi.org/10.1016/j.rasd.2016.05.005 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=292
in Research in Autism Spectrum Disorders > 29-30 (September–October 2016) . - p.19-29[article] Relations between specific and global outcome measures in a social-communication intervention for children with autism spectrum disorder [Texte imprimé et/ou numérique] / Anders NORDAHL-HANSEN, Auteur ; Sue FLETCHER-WATSON, Auteur ; Helen MCCONACHIE, Auteur ; Anett KAALE, Auteur . - p.19-29.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 29-30 (September–October 2016) . - p.19-29
Mots-clés : Autism spectrum disorders Social communication Treatment Intervention Outcome measures Brief observation of social communication change (BOSCC) Children Joint engagement Index. décimale : PER Périodiques Résumé : Abstract Assessment of relevant outcomes is a key challenge in evaluating effects of social-communication interventions. However, few studies have investigated in what ways specific and more global measures may influence reported results of social-communication interventions for children with autism spectrum disorder (ASD). In this study both a specific and a global, more global autism symptom measure were used to assess effects of a brief social-communication intervention. Fifty-nine children (2–4 years) diagnosed with autistic disorder were assessed with the Joint Engagement (JE) states coding procedure and a preliminary version of the Brief Observation of Social Communication Change (BOSCC). A statistically significant difference was found between intervention and control groups from baseline to intervention endpoint on JE but not on BOSCC. Degree of change on the measures was moderately related, and both were independent of language level and non-verbal mental age. This study adds to the knowledge of what may be expected of different outcome measures and provides suggestions to how measures may be deployed to investigate underlying mechanisms and developmental pathways. En ligne : http://dx.doi.org/10.1016/j.rasd.2016.05.005 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=292 Commentary: Measuring Language Change Through Natural Language Samples / Mihaela D. BAROKOVA in Journal of Autism and Developmental Disorders, 50-7 (July 2020)
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Titre : Commentary: Measuring Language Change Through Natural Language Samples Type de document : Texte imprimé et/ou numérique Auteurs : Mihaela D. BAROKOVA, Auteur ; Helen TAGER-FLUSBERG, Auteur Article en page(s) : p.2287-2306 Langues : Anglais (eng) Mots-clés : Autism Language Natural language samples Outcome measures Index. décimale : PER Périodiques Résumé : The role of language in autism spectrum disorder (ASD), more specifically, its function in social communication and strong predictive power on future outcomes, warrants language assessments that have good psychometric properties that capture the heterogeneity of language ability found among diagnosed individuals. Given the rapid growth in intervention and treatment research, there is an urgent need for the development and implementation of outcome measures that are easily obtained and sensitive to change. In this commentary, we argue for the use of natural language samples as measures of expressive language and communication for this purpose and review the literature on their implementation in ASD research. Conceptual and measurement issues are discussed and future developments are outlined. En ligne : http://dx.doi.org/10.1007/s10803-018-3628-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=426
in Journal of Autism and Developmental Disorders > 50-7 (July 2020) . - p.2287-2306[article] Commentary: Measuring Language Change Through Natural Language Samples [Texte imprimé et/ou numérique] / Mihaela D. BAROKOVA, Auteur ; Helen TAGER-FLUSBERG, Auteur . - p.2287-2306.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 50-7 (July 2020) . - p.2287-2306
Mots-clés : Autism Language Natural language samples Outcome measures Index. décimale : PER Périodiques Résumé : The role of language in autism spectrum disorder (ASD), more specifically, its function in social communication and strong predictive power on future outcomes, warrants language assessments that have good psychometric properties that capture the heterogeneity of language ability found among diagnosed individuals. Given the rapid growth in intervention and treatment research, there is an urgent need for the development and implementation of outcome measures that are easily obtained and sensitive to change. In this commentary, we argue for the use of natural language samples as measures of expressive language and communication for this purpose and review the literature on their implementation in ASD research. Conceptual and measurement issues are discussed and future developments are outlined. En ligne : http://dx.doi.org/10.1007/s10803-018-3628-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=426 Measuring social communication behaviors as a treatment endpoint in individuals with autism spectrum disorder / Evdokia ANAGNOSTOU in Autism, 19-5 (July 2015)
[article]
Titre : Measuring social communication behaviors as a treatment endpoint in individuals with autism spectrum disorder Type de document : Texte imprimé et/ou numérique Auteurs : Evdokia ANAGNOSTOU, Auteur ; Nancy JONES, Auteur ; Marisela HUERTA, Auteur ; Alycia K. HALLADAY, Auteur ; Paul WANG, Auteur ; Lawrence SCAHILL, Auteur ; Joseph P. HORRIGAN, Auteur ; Connie KASARI, Auteur ; Cathy LORD, Auteur ; Dennis W. CHOI, Auteur ; Katherine SULLIVAN, Auteur ; Geraldine DAWSON, Auteur Article en page(s) : p.622-636 Langues : Anglais (eng) Mots-clés : autism spectrum disorders behavioral measurement outcome measures social cognition and social behavior Index. décimale : PER Périodiques Résumé : Social communication impairments are a core deficit in autism spectrum disorder. Social communication deficit is also an early indicator of autism spectrum disorder and a factor in long-term outcomes. Thus, this symptom domain represents a critical treatment target. Identifying reliable and valid outcome measures for social communication across a range of treatment approaches is essential. Autism Speaks engaged a panel of experts to evaluate the readiness of available measures of social communication for use as outcome measures in clinical trials. The panel held monthly conference calls and two face-to-face meetings over 14?months. Key criteria used to evaluate measures included the relevance to the clinical target, coverage of the symptom domain, and psychometric properties (validity and reliability, as well as evidence of sensitivity to change). In all, 38 measures were evaluated and 6 measures were considered appropriate for use, with some limitations. This report discusses the relative strengths and weaknesses of existing social communication measures for use in clinical trials and identifies specific areas in need of further development. En ligne : http://dx.doi.org/10.1177/1362361314542955 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=261
in Autism > 19-5 (July 2015) . - p.622-636[article] Measuring social communication behaviors as a treatment endpoint in individuals with autism spectrum disorder [Texte imprimé et/ou numérique] / Evdokia ANAGNOSTOU, Auteur ; Nancy JONES, Auteur ; Marisela HUERTA, Auteur ; Alycia K. HALLADAY, Auteur ; Paul WANG, Auteur ; Lawrence SCAHILL, Auteur ; Joseph P. HORRIGAN, Auteur ; Connie KASARI, Auteur ; Cathy LORD, Auteur ; Dennis W. CHOI, Auteur ; Katherine SULLIVAN, Auteur ; Geraldine DAWSON, Auteur . - p.622-636.
Langues : Anglais (eng)
in Autism > 19-5 (July 2015) . - p.622-636
Mots-clés : autism spectrum disorders behavioral measurement outcome measures social cognition and social behavior Index. décimale : PER Périodiques Résumé : Social communication impairments are a core deficit in autism spectrum disorder. Social communication deficit is also an early indicator of autism spectrum disorder and a factor in long-term outcomes. Thus, this symptom domain represents a critical treatment target. Identifying reliable and valid outcome measures for social communication across a range of treatment approaches is essential. Autism Speaks engaged a panel of experts to evaluate the readiness of available measures of social communication for use as outcome measures in clinical trials. The panel held monthly conference calls and two face-to-face meetings over 14?months. Key criteria used to evaluate measures included the relevance to the clinical target, coverage of the symptom domain, and psychometric properties (validity and reliability, as well as evidence of sensitivity to change). In all, 38 measures were evaluated and 6 measures were considered appropriate for use, with some limitations. This report discusses the relative strengths and weaknesses of existing social communication measures for use in clinical trials and identifies specific areas in need of further development. En ligne : http://dx.doi.org/10.1177/1362361314542955 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=261 The NIH Toolbox Cognitive Battery for intellectual disabilities: three preliminary studies and future directions / D. HESSL in Journal of Neurodevelopmental Disorders, 8-1 (December 2016)
[article]
Titre : The NIH Toolbox Cognitive Battery for intellectual disabilities: three preliminary studies and future directions Type de document : Texte imprimé et/ou numérique Auteurs : D. HESSL, Auteur ; Stephanie M. SANSONE, Auteur ; Elizabeth BERRY-KRAVIS, Auteur ; K. RILEY, Auteur ; K. F. WIDAMAN, Auteur ; Leonard ABBEDUTO, Auteur ; A. SCHNEIDER, Auteur ; J. COLEMAN, Auteur ; D. OAKLANDER, Auteur ; K. C. RHODES, Auteur ; R. C. GERSHON, Auteur Article en page(s) : p.35 Langues : Anglais (eng) Mots-clés : Assessment Cognition Down syndrome FMR1 gene Fragile X syndrome Outcome measures Index. décimale : PER Périodiques Résumé : BACKGROUND: Recent advances in understanding molecular and synaptic mechanisms of intellectual disabilities (ID) in fragile X syndrome (FXS) and Down syndrome (DS) through animal models have led to targeted controlled trials with pharmacological agents designed to normalize these underlying mechanisms and improve clinical outcomes. However, several human clinical trials have failed to demonstrate efficacy of these targeted treatments to improve surrogate behavioral endpoints. Because the ultimate index of disease modification in these disorders is amelioration of ID, the validation of cognitive measures for tracking treatment response is essential. Here, we present preliminary research to validate the National Institutes of Health Toolbox Cognitive Battery (NIH-TCB) for ID. METHODS: We completed three pilot studies of patients with FXS (total n = 63; mean age 19.3 +/- 8.3 years, mean mental age 5.3 +/- 1.6 years), DS (n = 47; mean age 16.1 +/- 6.2, mean mental age 5.4 +/- 2.0), and idiopathic ID (IID; n = 16; mean age 16.1 +/- 5.0, mean mental age 6.6 +/- 2.3) measuring processing speed, executive function, episodic memory, word/letter reading, receptive vocabulary, and working memory using the web-based NIH-TB-CB, addressing feasibility, test-retest reliability, construct validity, ecological validity, and syndrome differences and profiles. RESULTS: Feasibility was good to excellent (>/=80 % of participants with valid scores) for above mental age 4 years for all tests except list sorting (working memory). Test-retest stability was good to excellent, and convergent validity was similar to or better than results obtained from typically developing children in the normal sample for executive function and language measures. Examination of ecological validity revealed moderate to very strong correlations between the NIH-TCB composite and adaptive behavior and full-scale IQ measures. Syndrome/group comparisons demonstrated significant deficits for the FXS and DS groups relative to IID on attention and inhibitory control, a significant reading weakness for FXS, and a receptive vocabulary weakness for DS. CONCLUSIONS: The NIH-TCB has potential for assessing important dimensions of cognition in persons with ID, and several tests may be useful for tracking response to intervention. However, more extensive psychometric studies, evaluation of the NIH-TCB's sensitivity to change, both developmentally and in the context of treatment, and perhaps establishing links to brain function in these populations, are required to determine the true utility of the battery as a set of outcome measures. En ligne : http://dx.doi.org/10.1186/s11689-016-9167-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=349
in Journal of Neurodevelopmental Disorders > 8-1 (December 2016) . - p.35[article] The NIH Toolbox Cognitive Battery for intellectual disabilities: three preliminary studies and future directions [Texte imprimé et/ou numérique] / D. HESSL, Auteur ; Stephanie M. SANSONE, Auteur ; Elizabeth BERRY-KRAVIS, Auteur ; K. RILEY, Auteur ; K. F. WIDAMAN, Auteur ; Leonard ABBEDUTO, Auteur ; A. SCHNEIDER, Auteur ; J. COLEMAN, Auteur ; D. OAKLANDER, Auteur ; K. C. RHODES, Auteur ; R. C. GERSHON, Auteur . - p.35.
Langues : Anglais (eng)
in Journal of Neurodevelopmental Disorders > 8-1 (December 2016) . - p.35
Mots-clés : Assessment Cognition Down syndrome FMR1 gene Fragile X syndrome Outcome measures Index. décimale : PER Périodiques Résumé : BACKGROUND: Recent advances in understanding molecular and synaptic mechanisms of intellectual disabilities (ID) in fragile X syndrome (FXS) and Down syndrome (DS) through animal models have led to targeted controlled trials with pharmacological agents designed to normalize these underlying mechanisms and improve clinical outcomes. However, several human clinical trials have failed to demonstrate efficacy of these targeted treatments to improve surrogate behavioral endpoints. Because the ultimate index of disease modification in these disorders is amelioration of ID, the validation of cognitive measures for tracking treatment response is essential. Here, we present preliminary research to validate the National Institutes of Health Toolbox Cognitive Battery (NIH-TCB) for ID. METHODS: We completed three pilot studies of patients with FXS (total n = 63; mean age 19.3 +/- 8.3 years, mean mental age 5.3 +/- 1.6 years), DS (n = 47; mean age 16.1 +/- 6.2, mean mental age 5.4 +/- 2.0), and idiopathic ID (IID; n = 16; mean age 16.1 +/- 5.0, mean mental age 6.6 +/- 2.3) measuring processing speed, executive function, episodic memory, word/letter reading, receptive vocabulary, and working memory using the web-based NIH-TB-CB, addressing feasibility, test-retest reliability, construct validity, ecological validity, and syndrome differences and profiles. RESULTS: Feasibility was good to excellent (>/=80 % of participants with valid scores) for above mental age 4 years for all tests except list sorting (working memory). Test-retest stability was good to excellent, and convergent validity was similar to or better than results obtained from typically developing children in the normal sample for executive function and language measures. Examination of ecological validity revealed moderate to very strong correlations between the NIH-TCB composite and adaptive behavior and full-scale IQ measures. Syndrome/group comparisons demonstrated significant deficits for the FXS and DS groups relative to IID on attention and inhibitory control, a significant reading weakness for FXS, and a receptive vocabulary weakness for DS. CONCLUSIONS: The NIH-TCB has potential for assessing important dimensions of cognition in persons with ID, and several tests may be useful for tracking response to intervention. However, more extensive psychometric studies, evaluation of the NIH-TCB's sensitivity to change, both developmentally and in the context of treatment, and perhaps establishing links to brain function in these populations, are required to determine the true utility of the battery as a set of outcome measures. En ligne : http://dx.doi.org/10.1186/s11689-016-9167-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=349 Understanding the Effects of Naturalistic Developmental Behavioral Interventions: A Project AIM Meta-analysis / Jenna E. CRANK in Autism Research, 14-4 (April 2021)
PermalinkUpdated report on tools to measure outcomes of clinical trials in fragile X syndrome / Dejan B. BUDIMIROVIC in Journal of Neurodevelopmental Disorders, 9-1 (December 2017)
PermalinkUtility of the Autism Diagnostic Observation Schedule and the Brief Observation of Social and Communication Change for Measuring Outcomes for a Parent-Mediated Early Autism Intervention / Sophie CARRUTHERS in Autism Research, 14-2 (February 2021)
PermalinkWhat are we targeting when we treat autism spectrum disorder? A systematic review of 406 clinical trials / Umberto PROVENZANI in Autism, 24-2 (February 2020)
PermalinkIncreased aperiodic gamma power in young boys with Fragile X Syndrome is associated with better language ability / C. L. WILKINSON in Molecular Autism, 12 (2021)
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