Choices, challenges, and constraints: a pragmatic examination of the limits of mental age matching in empirical research / N. RUSSO in Development and Psychopathology, 33-2 (May 2021)  

Public ISBD [article]  inDevelopment and Psychopathology > 33-2 (May 2021) . - p.727-738 Titre : Choices, challenges, and constraints: a pragmatic examination of the limits of mental age matching in empirical research Type de document : Texte imprimé et/ou numérique Auteurs : N. RUSSO, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; J. WILSON, Auteur ; A. CRISS, Auteur ; Jacob A. BURACK, Auteur Année de publication : 2021 Article en page(s) : p.727-738 Langues : Anglais (eng) Mots-clés : Iq  developmental approach  intellectual disability  mental age matching Index. décimale : PER Périodiques Résumé : The work of Ed Zigler spans decades of research all singularly dedicated to using science to improve the lives of children facing different challenges. The focus of this article is on one of Zigler's numerous lines of work: advocating for the practice of mental age (MA) matching in empirical research, wherein groups of individuals are matched on the basis of developmental level, rather than chronological age. While MA matching practices represented a paradigm shift that provided the seeds from which the developmental approach to developmental disability sprouted, it is not without its own limits. Here, we examine and test the underlying assumption of linearity inherent in MA matching using three commonly used IQ measures. Results provide practical constraints of using MA matching, a solution which we hope refines future clinical and empirical practices, furthering Zigler's legacy of continued commitment to compassionate, meaningful, and rigorous science in the service of children. En ligne : http://dx.doi.org/10.1017/s0954579420001480 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444 [article] Choices, challenges, and constraints: a pragmatic examination of the limits of mental age matching in empirical research [Texte imprimé et/ou numérique] / N. RUSSO, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; J. WILSON, Auteur ; A. CRISS, Auteur ; Jacob A. BURACK, Auteur . - 2021 . - p.727-738. Langues : Anglais (eng) in Development and Psychopathology > 33-2 (May 2021) . - p.727-738 Mots-clés : Iq  developmental approach  intellectual disability  mental age matching Index. décimale : PER Périodiques Résumé : The work of Ed Zigler spans decades of research all singularly dedicated to using science to improve the lives of children facing different challenges. The focus of this article is on one of Zigler's numerous lines of work: advocating for the practice of mental age (MA) matching in empirical research, wherein groups of individuals are matched on the basis of developmental level, rather than chronological age. While MA matching practices represented a paradigm shift that provided the seeds from which the developmental approach to developmental disability sprouted, it is not without its own limits. Here, we examine and test the underlying assumption of linearity inherent in MA matching using three commonly used IQ measures. Results provide practical constraints of using MA matching, a solution which we hope refines future clinical and empirical practices, furthering Zigler's legacy of continued commitment to compassionate, meaningful, and rigorous science in the service of children. En ligne : http://dx.doi.org/10.1017/s0954579420001480 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=444

Examining the latent structure and correlates of sensory reactivity in autism: a multi-site integrative data analysis by the autism sensory research consortium / Roseann SCHAAF ; Karla K. AUSDERAU ; Grace T. BARANEK ; D Jonah BARRETT ; Carissa J. CASCIO ; Rachel L. DUMONT ; Ekomobong E. Eyoh ; Michelle D. FAILLA ; Jacob I. FELDMAN ; Jennifer H. FOSS-FEIG ; Heather L. GREEN ; Shulamite A. GREEN ; Jason L. HE ; Elizabeth A. KAPLAN-KAHN ; Bahar KEÇELI-KAYS?L? ; Keren MACLENNAN ; Zoe MAILLOUX ; Elysa J. MARCO ; Lisa E. MASH ; Elizabeth P. MCKERNAN ; Sophie MOLHOLM ; Stewart H. MOSTOFSKY ; Nicolaas A. J. PUTS ; Caroline E. ROBERTSON ; Natalie RUSSO ; Nicole SHEA ; John SIDERIS ; James S. SUTCLIFFE ; Teresa TAVASSOLI ; Mark T. WALLACE ; Ericka L. WODKA ; Tiffany G. WOYNAROSKI in Molecular Autism, 14 (2023)  

Public ISBD [article]  inMolecular Autism > 14 (2023) . - 31 p. Titre : Examining the latent structure and correlates of sensory reactivity in autism: a multi-site integrative data analysis by the autism sensory research consortium Type de document : Texte imprimé et/ou numérique Auteurs : Roseann SCHAAF, Auteur ; Karla K. AUSDERAU, Auteur ; Grace T. BARANEK, Auteur ; D Jonah BARRETT, Auteur ; Carissa J. CASCIO, Auteur ; Rachel L. DUMONT, Auteur ; Ekomobong E. Eyoh, Auteur ; Michelle D. FAILLA, Auteur ; Jacob I. FELDMAN, Auteur ; Jennifer H. FOSS-FEIG, Auteur ; Heather L. GREEN, Auteur ; Shulamite A. GREEN, Auteur ; Jason L. HE, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; Bahar KEÇELI-KAYS?L?, Auteur ; Keren MACLENNAN, Auteur ; Zoe MAILLOUX, Auteur ; Elysa J. MARCO, Auteur ; Lisa E. MASH, Auteur ; Elizabeth P. MCKERNAN, Auteur ; Sophie MOLHOLM, Auteur ; Stewart H. MOSTOFSKY, Auteur ; Nicolaas A. J. PUTS, Auteur ; Caroline E. ROBERTSON, Auteur ; Natalie RUSSO, Auteur ; Nicole SHEA, Auteur ; John SIDERIS, Auteur ; James S. SUTCLIFFE, Auteur ; Teresa TAVASSOLI, Auteur ; Mark T. WALLACE, Auteur ; Ericka L. WODKA, Auteur ; Tiffany G. WOYNAROSKI, Auteur Article en page(s) : 31 p. Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : BACKGROUND: Differences in responding to sensory stimuli, including sensory hyperreactivity (HYPER), hyporeactivity (HYPO), and sensory seeking (SEEK) have been observed in autistic individuals across sensory modalities, but few studies have examined the structure of these "supra-modal" traits in the autistic population. METHODS: Leveraging a combined sample of 3868 autistic youth drawn from 12 distinct data sources (ages 3-18 years and representing the full range of cognitive ability), the current study used modern psychometric and meta-analytic techniques to interrogate the latent structure and correlates of caregiver-reported HYPER, HYPO, and SEEK within and across sensory modalities. Bifactor statistical indices were used to both evaluate the strength of a "general response pattern" factor for each supra-modal construct and determine the added value of "modality-specific response pattern" scores (e.g., Visual HYPER). Bayesian random-effects integrative data analysis models were used to examine the clinical and demographic correlates of all interpretable HYPER, HYPO, and SEEK (sub)constructs. RESULTS: All modality-specific HYPER subconstructs could be reliably and validly measured, whereas certain modality-specific HYPO and SEEK subconstructs were psychometrically inadequate when measured using existing items. Bifactor analyses supported the validity of a supra-modal HYPER construct (?(H)=.800) but not a supra-modal HYPO construct (?(H)=.653), and supra-modal SEEK models suggested a more limited version of the construct that excluded some sensory modalities (?(H)=.800; 4/7 modalities). Modality-specific subscales demonstrated significant added value for all response patterns. Meta-analytic correlations varied by construct, although sensory features tended to correlate most with other domains of core autism features and co-occurring psychiatric symptoms (with general HYPER and speech HYPO demonstrating the largest numbers of practically significant correlations). LIMITATIONS: Conclusions may not be generalizable beyond the specific pool of items used in the current study, which was limited to caregiver report of observable behaviors and excluded multisensory items that reflect many "real-world" sensory experiences. CONCLUSION: Of the three sensory response patterns, only HYPER demonstrated sufficient evidence for valid interpretation at the supra-modal level, whereas supra-modal HYPO/SEEK constructs demonstrated substantial psychometric limitations. For clinicians and researchers seeking to characterize sensory reactivity in autism, modality-specific response pattern scores may represent viable alternatives that overcome many of these limitations. En ligne : http://dx.doi.org/10.1186/s13229-023-00563-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513 [article] Examining the latent structure and correlates of sensory reactivity in autism: a multi-site integrative data analysis by the autism sensory research consortium [Texte imprimé et/ou numérique] / Roseann SCHAAF, Auteur ; Karla K. AUSDERAU, Auteur ; Grace T. BARANEK, Auteur ; D Jonah BARRETT, Auteur ; Carissa J. CASCIO, Auteur ; Rachel L. DUMONT, Auteur ; Ekomobong E. Eyoh, Auteur ; Michelle D. FAILLA, Auteur ; Jacob I. FELDMAN, Auteur ; Jennifer H. FOSS-FEIG, Auteur ; Heather L. GREEN, Auteur ; Shulamite A. GREEN, Auteur ; Jason L. HE, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; Bahar KEÇELI-KAYS?L?, Auteur ; Keren MACLENNAN, Auteur ; Zoe MAILLOUX, Auteur ; Elysa J. MARCO, Auteur ; Lisa E. MASH, Auteur ; Elizabeth P. MCKERNAN, Auteur ; Sophie MOLHOLM, Auteur ; Stewart H. MOSTOFSKY, Auteur ; Nicolaas A. J. PUTS, Auteur ; Caroline E. ROBERTSON, Auteur ; Natalie RUSSO, Auteur ; Nicole SHEA, Auteur ; John SIDERIS, Auteur ; James S. SUTCLIFFE, Auteur ; Teresa TAVASSOLI, Auteur ; Mark T. WALLACE, Auteur ; Ericka L. WODKA, Auteur ; Tiffany G. WOYNAROSKI, Auteur . - 31 p. Langues : Anglais (eng) in Molecular Autism > 14 (2023) . - 31 p. Index. décimale : PER Périodiques Résumé : BACKGROUND: Differences in responding to sensory stimuli, including sensory hyperreactivity (HYPER), hyporeactivity (HYPO), and sensory seeking (SEEK) have been observed in autistic individuals across sensory modalities, but few studies have examined the structure of these "supra-modal" traits in the autistic population. METHODS: Leveraging a combined sample of 3868 autistic youth drawn from 12 distinct data sources (ages 3-18 years and representing the full range of cognitive ability), the current study used modern psychometric and meta-analytic techniques to interrogate the latent structure and correlates of caregiver-reported HYPER, HYPO, and SEEK within and across sensory modalities. Bifactor statistical indices were used to both evaluate the strength of a "general response pattern" factor for each supra-modal construct and determine the added value of "modality-specific response pattern" scores (e.g., Visual HYPER). Bayesian random-effects integrative data analysis models were used to examine the clinical and demographic correlates of all interpretable HYPER, HYPO, and SEEK (sub)constructs. RESULTS: All modality-specific HYPER subconstructs could be reliably and validly measured, whereas certain modality-specific HYPO and SEEK subconstructs were psychometrically inadequate when measured using existing items. Bifactor analyses supported the validity of a supra-modal HYPER construct (?(H)=.800) but not a supra-modal HYPO construct (?(H)=.653), and supra-modal SEEK models suggested a more limited version of the construct that excluded some sensory modalities (?(H)=.800; 4/7 modalities). Modality-specific subscales demonstrated significant added value for all response patterns. Meta-analytic correlations varied by construct, although sensory features tended to correlate most with other domains of core autism features and co-occurring psychiatric symptoms (with general HYPER and speech HYPO demonstrating the largest numbers of practically significant correlations). LIMITATIONS: Conclusions may not be generalizable beyond the specific pool of items used in the current study, which was limited to caregiver report of observable behaviors and excluded multisensory items that reflect many "real-world" sensory experiences. CONCLUSION: Of the three sensory response patterns, only HYPER demonstrated sufficient evidence for valid interpretation at the supra-modal level, whereas supra-modal HYPO/SEEK constructs demonstrated substantial psychometric limitations. For clinicians and researchers seeking to characterize sensory reactivity in autism, modality-specific response pattern scores may represent viable alternatives that overcome many of these limitations. En ligne : http://dx.doi.org/10.1186/s13229-023-00563-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513

Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research / Hillary K. SCHILTZ in Autism Research, 17-4 (April 2024)  

Public ISBD [article]  inAutism Research > 17-4 (April 2024) . - p.690-701 Titre : Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research Type de document : Texte imprimé et/ou numérique Auteurs : Hillary K. SCHILTZ, Auteur ; Zachary J. WILLIAMS, Auteur ; Shuting ZHENG, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; Hannah E. MORTON, Auteur ; Kashia A. ROSENAU, Auteur ; Christina NICOLAIDIS, Auteur ; Alexandra STURM, Auteur ; Catherine LORD, Auteur ; Autism PROMNET, Auteur Article en page(s) : p.690-701 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families. En ligne : https://doi.org/10.1002/aur.3114 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=526 [article] Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research [Texte imprimé et/ou numérique] / Hillary K. SCHILTZ, Auteur ; Zachary J. WILLIAMS, Auteur ; Shuting ZHENG, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; Hannah E. MORTON, Auteur ; Kashia A. ROSENAU, Auteur ; Christina NICOLAIDIS, Auteur ; Alexandra STURM, Auteur ; Catherine LORD, Auteur ; Autism PROMNET, Auteur . - p.690-701. Langues : Anglais (eng) in Autism Research > 17-4 (April 2024) . - p.690-701 Index. décimale : PER Périodiques Résumé : Abstract High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families. En ligne : https://doi.org/10.1002/aur.3114 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=526

Using percentiles in the interpretation of Patient-Reported Outcomes Measurement Information System scores: Guidelines for autism / Julia SCHUCHARD in Autism Research, 15-12 (December 2022)  

Public ISBD [article]  inAutism Research > 15-12 (December 2022) . - p.2336-2345 Titre : Using percentiles in the interpretation of Patient-Reported Outcomes Measurement Information System scores: Guidelines for autism Type de document : Texte imprimé et/ou numérique Auteurs : Julia SCHUCHARD, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; Adam C CARLE, Auteur ; Laura GRAHAM HOLMES, Auteur ; Kiely LAW, Auteur ; Judith S MILLER, Auteur ; Julia PARISH-MORRIS, Auteur ; Christopher B. FORREST, Auteur Article en page(s) : p.2336-2345 Langues : Anglais (eng) Mots-clés : Child  Adolescent  Humans  United States  Child, Preschool  Autistic Disorder/complications/diagnosis  Surveys and Questionnaires  Quality of Life  Autism Spectrum Disorder  Patient Reported Outcome Measures  Sleep Wake Disorders/diagnosis/epidemiology  Information Systems  Promis  autism  material hardship  parent-report  patient-reported outcomes Index. décimale : PER Périodiques Résumé : The objectives of this study were to (1) demonstrate the application of percentiles to advance the interpretation of patient-reported outcomes and (2) establish autism-specific percentiles for four Patient-Reported Outcomes Measurement Information System (PROMIS) measures. PROMIS measures were completed by parents of autistic children and adolescents ages 5-17 years as part of two studies (n = 939 parents in the first study and n = 406 parents in the second study). Data from the first study were used to develop autism-specific percentiles for PROMIS parent-proxy sleep disturbance, sleep-related impairment, fatigue, and anxiety. Previously established United States general population percentiles were applied to interpret PROMIS scores in both studies. Results of logistic regression models showed that parent-reported material hardship was associated with scoring in the moderate-severe range (defined as â¥75th percentile in the general population) on all four PROMIS measures (odds ratios 1.7-2.2). In the second study, the percentage of children with severe scores (defined as â¥95th percentile in the general population) was 30% for anxiety, 25% for sleep disturbance, and 17% for sleep-related impairment, indicating a high burden of these problems among autistic children. Few children had scores at or above the autism-specific 95th percentile on these measures (3%-4%), indicating that their scores were similar to other autistic children. The general population and condition-specific percentiles provide two complementary reference points to aid interpretation of PROMIS scores, including corresponding severity categories that are comparable across different PROMIS measures. En ligne : http://dx.doi.org/10.1002/aur.2833 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488 [article] Using percentiles in the interpretation of Patient-Reported Outcomes Measurement Information System scores: Guidelines for autism [Texte imprimé et/ou numérique] / Julia SCHUCHARD, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; Adam C CARLE, Auteur ; Laura GRAHAM HOLMES, Auteur ; Kiely LAW, Auteur ; Judith S MILLER, Auteur ; Julia PARISH-MORRIS, Auteur ; Christopher B. FORREST, Auteur . - p.2336-2345. Langues : Anglais (eng) in Autism Research > 15-12 (December 2022) . - p.2336-2345 Mots-clés : Child  Adolescent  Humans  United States  Child, Preschool  Autistic Disorder/complications/diagnosis  Surveys and Questionnaires  Quality of Life  Autism Spectrum Disorder  Patient Reported Outcome Measures  Sleep Wake Disorders/diagnosis/epidemiology  Information Systems  Promis  autism  material hardship  parent-report  patient-reported outcomes Index. décimale : PER Périodiques Résumé : The objectives of this study were to (1) demonstrate the application of percentiles to advance the interpretation of patient-reported outcomes and (2) establish autism-specific percentiles for four Patient-Reported Outcomes Measurement Information System (PROMIS) measures. PROMIS measures were completed by parents of autistic children and adolescents ages 5-17 years as part of two studies (n = 939 parents in the first study and n = 406 parents in the second study). Data from the first study were used to develop autism-specific percentiles for PROMIS parent-proxy sleep disturbance, sleep-related impairment, fatigue, and anxiety. Previously established United States general population percentiles were applied to interpret PROMIS scores in both studies. Results of logistic regression models showed that parent-reported material hardship was associated with scoring in the moderate-severe range (defined as â¥75th percentile in the general population) on all four PROMIS measures (odds ratios 1.7-2.2). In the second study, the percentage of children with severe scores (defined as â¥95th percentile in the general population) was 30% for anxiety, 25% for sleep disturbance, and 17% for sleep-related impairment, indicating a high burden of these problems among autistic children. Few children had scores at or above the autism-specific 95th percentile on these measures (3%-4%), indicating that their scores were similar to other autistic children. The general population and condition-specific percentiles provide two complementary reference points to aid interpretation of PROMIS scores, including corresponding severity categories that are comparable across different PROMIS measures. En ligne : http://dx.doi.org/10.1002/aur.2833 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=488

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