Development of a standardized set of outcomes for autism spectrum disorder: The International Consortium for Health Outcomes Measurement (ICHOM) / Ivy CHONG ; Zofia DAS-GUPTA ; Claudia Bandeira DE LIMA ; Dennis DIXON ; Svyatoslav DOVBNYA ; Ellen FITTRO ; Peter GERHARDT ; Weihe HUANG ; Braden JOSEPHSON ; DAN LI ; Neil MARTIN ; Shaneel MUKERJI ; Kristine RODRIGUEZ ; Hanna RUE ; Kim STRUNK ; Jonathan TARBOX ; Yagnesh VADGAMA ; Amber VALENTINO ; Javier VIRUES-ORTEGA ; Sandra WILLIS in Research in Autism Spectrum Disorders, 117 (September 2024)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 117 (September 2024) . - p.102451 Titre : Development of a standardized set of outcomes for autism spectrum disorder: The International Consortium for Health Outcomes Measurement (ICHOM) Type de document : Texte imprimé et/ou numérique Auteurs : Ivy CHONG, Auteur ; Zofia DAS-GUPTA, Auteur ; Claudia Bandeira DE LIMA, Auteur ; Dennis DIXON, Auteur ; Svyatoslav DOVBNYA, Auteur ; Ellen FITTRO, Auteur ; Peter GERHARDT, Auteur ; Weihe HUANG, Auteur ; Braden JOSEPHSON, Auteur ; DAN LI, Auteur ; Neil MARTIN, Auteur ; Shaneel MUKERJI, Auteur ; Kristine RODRIGUEZ, Auteur ; Hanna RUE, Auteur ; Kim STRUNK, Auteur ; Jonathan TARBOX, Auteur ; Yagnesh VADGAMA, Auteur ; Amber VALENTINO, Auteur ; Javier VIRUES-ORTEGA, Auteur ; Sandra WILLIS, Auteur Article en page(s) : p.102451 Langues : Anglais (eng) Mots-clés : ASD  Outcomes  Social communication  Repetitive behaviors Index. décimale : PER Périodiques Résumé : Background Autism spectrum disorder (ASD) is characterized by persistent deficits in reciprocal social interaction, communication, and restricted, repetitive, behaviour, that are atypical or excessive for the individual?s age and sociocultural context (Diagnostic and Statistical Manual 5th ed TR.; 2022). The rate of ASD continues to increase and remains a concern due to inequitable access to diagnosis and quality services. A lack of standardization in assessment and treatment presents further difficulty in benchmarking and improving care. Method The International Consortium for Health Outcomes Measurement (ICHOM) recruited a Working Group (WG) of 20 subject matter experts, including researchers, clinicians, policy makers, and lived-experience experts to identify a minimum set of measurable outcomes along with case mix variables (i.e., risk adjustment factors). A proposed set of Patient Centered Outcome Measures (henceforth known as the ASD Set) was identified and endorsed using a modified Delphi process to reach consensus. Results The WG took into consideration variation in global health, social care and educational systems were considered to ensure implementation of the ASD Set is feasible. The Set includes a core set of measurable outcomes (i.e., domains) that include core symptoms, daily functioning, accessibility, and support. Conclusions The ICHOM ASD Set is a scientifically-sound, internationally vetted tool that will enable assessment of care for individuals with ASD that can facilitate targeted, person-centered clinical and social inclusion strategies. Large scale implementation and use should generate standardized data describing the individual's health and wellbeing that can inform decision-making, quality improvement and best-practices insights. En ligne : https://doi.org/10.1016/j.rasd.2024.102451 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=534 [article] Development of a standardized set of outcomes for autism spectrum disorder: The International Consortium for Health Outcomes Measurement (ICHOM) [Texte imprimé et/ou numérique] / Ivy CHONG, Auteur ; Zofia DAS-GUPTA, Auteur ; Claudia Bandeira DE LIMA, Auteur ; Dennis DIXON, Auteur ; Svyatoslav DOVBNYA, Auteur ; Ellen FITTRO, Auteur ; Peter GERHARDT, Auteur ; Weihe HUANG, Auteur ; Braden JOSEPHSON, Auteur ; DAN LI, Auteur ; Neil MARTIN, Auteur ; Shaneel MUKERJI, Auteur ; Kristine RODRIGUEZ, Auteur ; Hanna RUE, Auteur ; Kim STRUNK, Auteur ; Jonathan TARBOX, Auteur ; Yagnesh VADGAMA, Auteur ; Amber VALENTINO, Auteur ; Javier VIRUES-ORTEGA, Auteur ; Sandra WILLIS, Auteur . - p.102451. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 117 (September 2024) . - p.102451 Mots-clés : ASD  Outcomes  Social communication  Repetitive behaviors Index. décimale : PER Périodiques Résumé : Background Autism spectrum disorder (ASD) is characterized by persistent deficits in reciprocal social interaction, communication, and restricted, repetitive, behaviour, that are atypical or excessive for the individual?s age and sociocultural context (Diagnostic and Statistical Manual 5th ed TR.; 2022). The rate of ASD continues to increase and remains a concern due to inequitable access to diagnosis and quality services. A lack of standardization in assessment and treatment presents further difficulty in benchmarking and improving care. Method The International Consortium for Health Outcomes Measurement (ICHOM) recruited a Working Group (WG) of 20 subject matter experts, including researchers, clinicians, policy makers, and lived-experience experts to identify a minimum set of measurable outcomes along with case mix variables (i.e., risk adjustment factors). A proposed set of Patient Centered Outcome Measures (henceforth known as the ASD Set) was identified and endorsed using a modified Delphi process to reach consensus. Results The WG took into consideration variation in global health, social care and educational systems were considered to ensure implementation of the ASD Set is feasible. The Set includes a core set of measurable outcomes (i.e., domains) that include core symptoms, daily functioning, accessibility, and support. Conclusions The ICHOM ASD Set is a scientifically-sound, internationally vetted tool that will enable assessment of care for individuals with ASD that can facilitate targeted, person-centered clinical and social inclusion strategies. Large scale implementation and use should generate standardized data describing the individual's health and wellbeing that can inform decision-making, quality improvement and best-practices insights. En ligne : https://doi.org/10.1016/j.rasd.2024.102451 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=534

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