Assessment of Caregiver Inventory for Rett Syndrome / Jane B. LANE in Journal of Autism and Developmental Disorders, 47-4 (April 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-4 (April 2017) . - p.1102-1112 Titre : Assessment of Caregiver Inventory for Rett Syndrome Type de document : texte imprimé Auteurs : Jane B. LANE, Auteur ; Amber R. SALTER, Auteur ; Nancy JONES, Auteur ; Gary CUTTER, Auteur ; Joseph P. HORRIGAN, Auteur ; Steve A. SKINNER, Auteur ; Walter E. KAUFMANN, Auteur ; Daniel G. GLAZE, Auteur ; Jeffrey L. NEUL, Auteur ; Alan K. PERCY, Auteur Article en page(s) : p.1102-1112 Langues : Anglais (eng) Mots-clés : Rett syndrome  Caregiver  Inventory  MECP2  Factor analysis Index. décimale : PER Périodiques Résumé : Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi square or Fisher’s exact test for categorical variables and t tests or Wilcoxon two-sample tests for continuous variables were utilized. Survey completed by 198 caregivers; 70 caregivers completed follow-up assessment. Exploratory factor analysis revealed good agreement for physical burden, emotional burden, and social burden. Internal reliability was high (Cronbach’s alpha 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder. En ligne : http://dx.doi.org/10.1007/s10803-017-3034-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=304 [article] Assessment of Caregiver Inventory for Rett Syndrome [texte imprimé] / Jane B. LANE, Auteur ; Amber R. SALTER, Auteur ; Nancy JONES, Auteur ; Gary CUTTER, Auteur ; Joseph P. HORRIGAN, Auteur ; Steve A. SKINNER, Auteur ; Walter E. KAUFMANN, Auteur ; Daniel G. GLAZE, Auteur ; Jeffrey L. NEUL, Auteur ; Alan K. PERCY, Auteur . - p.1102-1112. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-4 (April 2017) . - p.1102-1112 Mots-clés : Rett syndrome  Caregiver  Inventory  MECP2  Factor analysis Index. décimale : PER Périodiques Résumé : Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi square or Fisher’s exact test for categorical variables and t tests or Wilcoxon two-sample tests for continuous variables were utilized. Survey completed by 198 caregivers; 70 caregivers completed follow-up assessment. Exploratory factor analysis revealed good agreement for physical burden, emotional burden, and social burden. Internal reliability was high (Cronbach’s alpha 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder. En ligne : http://dx.doi.org/10.1007/s10803-017-3034-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=304

Intrusive and Withdrawn Behaviours of Mothers Interacting with Their Infants and Boyfriends / Sybil HART in Journal of Child Psychology and Psychiatry, 40-2 (February 1999)

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 40-2 (February 1999) . - p.239-245 Titre : Intrusive and Withdrawn Behaviours of Mothers Interacting with Their Infants and Boyfriends Type de document : texte imprimé Auteurs : Sybil HART, Auteur ; Tiffany FIELD, Auteur ; Nancy JONES, Auteur ; Regina YANDO, Auteur Année de publication : 1999 Article en page(s) : p.239-245 Langues : Anglais (eng) Mots-clés : Depression  perinatal  infancy Index. décimale : PER Périodiques Résumé : Investigated stability and change in intrusive and withdrawn interaction behaviours of 23 mothers in Study 1 and 31 mothers in Study 2. Comparisons between mother-infant and mother-boyfriend interactions revealed that mothers who had been withdrawn with their infants were quiet, bored-looking, physically distant, and underinvolved with their boyfriends. Mothers who had been intrusive with their infants were verbally sharp and controlling with their boyfriends. These findings suggested stability across social contexts. Comparing maternal responding to instructions to think about themselves (self-focus) or their infants (infant-focus) revealed that infant-focusing attenuated intrusive behavior among intrusive mothers and self-focusing attenuated negative affect among withdrawn mothers. These findings suggested that cognitive focusing ameliorates nonoptimal maternal behaviours and has differential effects on intrusive and withdrawn mothers. Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=124 [article] Intrusive and Withdrawn Behaviours of Mothers Interacting with Their Infants and Boyfriends [texte imprimé] / Sybil HART, Auteur ; Tiffany FIELD, Auteur ; Nancy JONES, Auteur ; Regina YANDO, Auteur . - 1999 . - p.239-245. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 40-2 (February 1999) . - p.239-245 Mots-clés : Depression  perinatal  infancy Index. décimale : PER Périodiques Résumé : Investigated stability and change in intrusive and withdrawn interaction behaviours of 23 mothers in Study 1 and 31 mothers in Study 2. Comparisons between mother-infant and mother-boyfriend interactions revealed that mothers who had been withdrawn with their infants were quiet, bored-looking, physically distant, and underinvolved with their boyfriends. Mothers who had been intrusive with their infants were verbally sharp and controlling with their boyfriends. These findings suggested stability across social contexts. Comparing maternal responding to instructions to think about themselves (self-focus) or their infants (infant-focus) revealed that infant-focusing attenuated intrusive behavior among intrusive mothers and self-focusing attenuated negative affect among withdrawn mothers. These findings suggested that cognitive focusing ameliorates nonoptimal maternal behaviours and has differential effects on intrusive and withdrawn mothers. Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=124

Measuring Anxiety as a Treatment Endpoint in Youth with Autism Spectrum Disorder / Luc LECAVALIER in Journal of Autism and Developmental Disorders, 44-5 (May 2014)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 44-5 (May 2014) . - p.1128-1143 Titre : Measuring Anxiety as a Treatment Endpoint in Youth with Autism Spectrum Disorder Type de document : texte imprimé Auteurs : Luc LECAVALIER, Auteur ; Jeffrey J. WOOD, Auteur ; Alycia K. HALLADAY, Auteur ; Nancy JONES, Auteur ; Michael G. AMAN, Auteur ; Edwin H. Jr COOK, Auteur ; Benjamin L. HANDEN, Auteur ; Bryan H. KING, Auteur ; Deborah A. PEARSON, Auteur ; Victoria HALLETT, Auteur ; Katherine Anne SULLIVAN, Auteur ; Sabrina N. GRONDHUIS, Auteur ; Somer L. BISHOP, Auteur ; Joseph P. HORRIGAN, Auteur ; Geraldine DAWSON, Auteur ; Lawrence SCAHILL, Auteur Année de publication : 2014 Article en page(s) : p.1128-1143 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Anxiety  Instrument  Measure  Assessment  Treatment  Intervention Index. décimale : PER Périodiques Résumé : Despite the high rate of anxiety in individuals with autism spectrum disorder (ASD), measuring anxiety in ASD is fraught with uncertainty. This is due, in part, to incomplete consensus on the manifestations of anxiety in this population. Autism Speaks assembled a panel of experts to conduct a systematic review of available measures for anxiety in youth with ASD. To complete the review, the panel held monthly conference calls and two face-to-face meetings over a fourteen-month period. Thirty eight published studies were reviewed and ten assessment measures were examined: four were deemed appropriate for use in clinical trials, although with conditions; three were judged to be potentially appropriate, while three were considered not useful for clinical trials assessing anxiety. Despite recent advances, additional relevant, reliable and valid outcome measures are needed to evaluate treatments for anxiety in ASD. En ligne : http://dx.doi.org/10.1007/s10803-013-1974-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=232 [article] Measuring Anxiety as a Treatment Endpoint in Youth with Autism Spectrum Disorder [texte imprimé] / Luc LECAVALIER, Auteur ; Jeffrey J. WOOD, Auteur ; Alycia K. HALLADAY, Auteur ; Nancy JONES, Auteur ; Michael G. AMAN, Auteur ; Edwin H. Jr COOK, Auteur ; Benjamin L. HANDEN, Auteur ; Bryan H. KING, Auteur ; Deborah A. PEARSON, Auteur ; Victoria HALLETT, Auteur ; Katherine Anne SULLIVAN, Auteur ; Sabrina N. GRONDHUIS, Auteur ; Somer L. BISHOP, Auteur ; Joseph P. HORRIGAN, Auteur ; Geraldine DAWSON, Auteur ; Lawrence SCAHILL, Auteur . - 2014 . - p.1128-1143. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 44-5 (May 2014) . - p.1128-1143 Mots-clés : Autism spectrum disorder  Anxiety  Instrument  Measure  Assessment  Treatment  Intervention Index. décimale : PER Périodiques Résumé : Despite the high rate of anxiety in individuals with autism spectrum disorder (ASD), measuring anxiety in ASD is fraught with uncertainty. This is due, in part, to incomplete consensus on the manifestations of anxiety in this population. Autism Speaks assembled a panel of experts to conduct a systematic review of available measures for anxiety in youth with ASD. To complete the review, the panel held monthly conference calls and two face-to-face meetings over a fourteen-month period. Thirty eight published studies were reviewed and ten assessment measures were examined: four were deemed appropriate for use in clinical trials, although with conditions; three were judged to be potentially appropriate, while three were considered not useful for clinical trials assessing anxiety. Despite recent advances, additional relevant, reliable and valid outcome measures are needed to evaluate treatments for anxiety in ASD. En ligne : http://dx.doi.org/10.1007/s10803-013-1974-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=232

Measuring repetitive behaviors as a treatment endpoint in youth with autism spectrum disorder / Lawrence SCAHILL in Autism, 19-1 (January 2015)  

Public ISBD [article]  inAutism > 19-1 (January 2015) . - p.38-52 Titre : Measuring repetitive behaviors as a treatment endpoint in youth with autism spectrum disorder Type de document : texte imprimé Auteurs : Lawrence SCAHILL, Auteur ; Michael G. AMAN, Auteur ; Luc LECAVALIER, Auteur ; Alycia K. HALLADAY, Auteur ; Somer L. BISHOP, Auteur ; James W. BODFISH, Auteur ; Sabrina N. GRONDHUIS, Auteur ; Nancy JONES, Auteur ; Joseph P. HORRIGAN, Auteur ; Edwin H. Jr COOK, Auteur ; Benjamin L. HANDEN, Auteur ; Bryan H. KING, Auteur ; Deborah A. PEARSON, Auteur ; James T. MCCRACKEN, Auteur ; Katherine Anne SULLIVAN, Auteur ; Geraldine DAWSON, Auteur Année de publication : 2015 Article en page(s) : p.38-52 Langues : Anglais (eng) Mots-clés : Assessment  autism spectrum disorders  instrument  intervention  repetitive behavior  restricted interests  measure  treatment; Index. décimale : PER Périodiques Résumé : Restricted interests and repetitive behaviors vary widely in type, frequency, and intensity among children and adolescents with autism spectrum disorder. They can be stigmatizing and interfere with more constructive activities. Accordingly, restricted interests and repetitive behaviors may be a target of intervention. Several standardized instruments have been developed to assess restricted interests and repetitive behaviors in the autism spectrum disorder population, but the rigor of psychometric assessment is variable. This article evaluated the readiness of available measures for use as outcome measures in clinical trials. The Autism Speaks Foundation assembled a panel of experts to examine available instruments used to measure restricted interests and repetitive behaviors in youth with autism spectrum disorder. The panel held monthly conference calls and two face-to-face meetings over 14 months to develop and apply evaluative criteria for available instruments. Twenty-four instruments were evaluated and five were considered “appropriate with conditions” for use as outcome measures in clinical trials. Ideally, primary outcome measures should be relevant to the clinical target, be reliable and valid, and cover the symptom domain without being burdensome to subjects. The goal of the report was to promote consensus across funding agencies, pharmaceutical companies, and clinical investigators about advantages and disadvantages of existing outcome measures. En ligne : http://dx.doi.org/10.1177/1362361313510069 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=245 [article] Measuring repetitive behaviors as a treatment endpoint in youth with autism spectrum disorder [texte imprimé] / Lawrence SCAHILL, Auteur ; Michael G. AMAN, Auteur ; Luc LECAVALIER, Auteur ; Alycia K. HALLADAY, Auteur ; Somer L. BISHOP, Auteur ; James W. BODFISH, Auteur ; Sabrina N. GRONDHUIS, Auteur ; Nancy JONES, Auteur ; Joseph P. HORRIGAN, Auteur ; Edwin H. Jr COOK, Auteur ; Benjamin L. HANDEN, Auteur ; Bryan H. KING, Auteur ; Deborah A. PEARSON, Auteur ; James T. MCCRACKEN, Auteur ; Katherine Anne SULLIVAN, Auteur ; Geraldine DAWSON, Auteur . - 2015 . - p.38-52. Langues : Anglais (eng) in Autism > 19-1 (January 2015) . - p.38-52 Mots-clés : Assessment  autism spectrum disorders  instrument  intervention  repetitive behavior  restricted interests  measure  treatment; Index. décimale : PER Périodiques Résumé : Restricted interests and repetitive behaviors vary widely in type, frequency, and intensity among children and adolescents with autism spectrum disorder. They can be stigmatizing and interfere with more constructive activities. Accordingly, restricted interests and repetitive behaviors may be a target of intervention. Several standardized instruments have been developed to assess restricted interests and repetitive behaviors in the autism spectrum disorder population, but the rigor of psychometric assessment is variable. This article evaluated the readiness of available measures for use as outcome measures in clinical trials. The Autism Speaks Foundation assembled a panel of experts to examine available instruments used to measure restricted interests and repetitive behaviors in youth with autism spectrum disorder. The panel held monthly conference calls and two face-to-face meetings over 14 months to develop and apply evaluative criteria for available instruments. Twenty-four instruments were evaluated and five were considered “appropriate with conditions” for use as outcome measures in clinical trials. Ideally, primary outcome measures should be relevant to the clinical target, be reliable and valid, and cover the symptom domain without being burdensome to subjects. The goal of the report was to promote consensus across funding agencies, pharmaceutical companies, and clinical investigators about advantages and disadvantages of existing outcome measures. En ligne : http://dx.doi.org/10.1177/1362361313510069 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=245

Measuring social communication behaviors as a treatment endpoint in individuals with autism spectrum disorder / Evdokia ANAGNOSTOU in Autism, 19-5 (July 2015)  

Public ISBD [article]  inAutism > 19-5 (July 2015) . - p.622-636 Titre : Measuring social communication behaviors as a treatment endpoint in individuals with autism spectrum disorder Type de document : texte imprimé 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 ; Catherine 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 [article] Measuring social communication behaviors as a treatment endpoint in individuals with autism spectrum disorder [texte imprimé] / 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 ; Catherine 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

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