Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" / Christina NICOLAIDIS in Autism, 29-8 (August 2025)  

Public ISBD [article]  inAutism > 29-8 (August 2025) . - p.1959-1972 Titre : Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" Type de document : texte imprimé Auteurs : Christina NICOLAIDIS, Auteur ; Mirah SCHARER, Auteur ; Dora M RAYMAKER, Auteur ; Joseph VERA, Auteur ; Todd EDWARDS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Joelle MASLAK, Auteur ; Liu-Qin YANG, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Steven K KAPP, Auteur ; Andrea JOYCE, Auteur ; Anna WALLINGTON, Auteur ; null NULL, Auteur Article en page(s) : p.1959-1972 Langues : Anglais (eng) Mots-clés : autistic adults  Delphi method  community-based participatory research  patient-reported outcome measures Index. décimale : PER Périodiques Résumé : People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven "Delphi process" within our community-based participatory research approach in what we are calling a "CBPR-Nested Delphi Process." The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.Lay abstract Why was this project done?People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services.What were the goals of the project?To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys.What did the researchers do?We used a method called a "Delphi process" that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers.What does this study add?The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers).What are the implications?Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251322082 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564 [article] Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" [texte imprimé] / Christina NICOLAIDIS, Auteur ; Mirah SCHARER, Auteur ; Dora M RAYMAKER, Auteur ; Joseph VERA, Auteur ; Todd EDWARDS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Joelle MASLAK, Auteur ; Liu-Qin YANG, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Steven K KAPP, Auteur ; Andrea JOYCE, Auteur ; Anna WALLINGTON, Auteur ; null NULL, Auteur . - p.1959-1972. Langues : Anglais (eng) in Autism > 29-8 (August 2025) . - p.1959-1972 Mots-clés : autistic adults  Delphi method  community-based participatory research  patient-reported outcome measures Index. décimale : PER Périodiques Résumé : People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven "Delphi process" within our community-based participatory research approach in what we are calling a "CBPR-Nested Delphi Process." The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.Lay abstract Why was this project done?People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services.What were the goals of the project?To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys.What did the researchers do?We used a method called a "Delphi process" that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers.What does this study add?The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers).What are the implications?Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251322082 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564

The Brief Observation of Symptoms of Autism: Validation study in a Latin American sample / Nora GRANANA in Autism, 29-4 (April 2025)  

Public ISBD [article]  inAutism > 29-4 (April 2025) . - p.896-906 Titre : The Brief Observation of Symptoms of Autism: Validation study in a Latin American sample Type de document : texte imprimé Auteurs : Nora GRANANA, Auteur ; Francisco ASTORINO, Auteur ; Alba RICHAUDEAU, Auteur ; Lucas COSTA, Auteur ; Elena FERNANDEZ DE CARRERA, Auteur ; Valeria NANCLARES, Auteur ; Kristin SOHL, Auteur ; null NULL, Auteur Article en page(s) : p.896-906 Langues : Anglais (eng) Mots-clés : ADOS  American  assessment  autism  BOSA  diagnostic  Latin Index. décimale : PER Périodiques Résumé : Autism spectrum disorder presents as a multifaceted condition characterized by pronounced impairments in social communication and behavioral patterns. Diagnosis hinges upon the expertise of clinicians, comprehensive developmental history, and observation of specific behavioral markers. However, in low-income countries, access to screening tools and standardized diagnostic tests for autism spectrum disorder remains profoundly limited. Moreover, the COVID-19 pandemic has exacerbated these challenges, rendering diagnostic protocols impractical. In response to these barriers, the Brief Observation of Symptoms of Autism instrument was developed to facilitate assessments via telehealth during the pandemic. This study aims to validate the use of the Brief Observation of Symptoms of Autism within two Latin American countries, Argentina, and Chile. A cohort of 313 spanning various age groups underwent examination. Psychometric properties of each Brief Observation of Symptoms of Autism module were scrutinized, including sensitivity and specificity against the recommended University of California at Los Angeles cutoffs. Receiver operating characteristic curve analysis yielded credible sensitivity and specificity scores for each module. Confirmatory factor analysis supported a favorable fit across modules, employing a 2-factor model distinguishing Social Affect and Restricted, Repetitive Behaviors. Preliminary findings affirm the validity of the Brief Observation of Symptoms of Autism as an effective diagnostic tool within the Latin American population. Furthermore, its potential extends beyond the pandemic, promising support in the future.Lay abstract Autism spectrum disorder is a complex condition associated with significant impairments in social communication and behavioral functioning. Diagnosis is dependent on clinician expertise, gathering of developmental history, and observation of specific behaviors. The suggested protocols include tools rendered invalid during the pandemic, which created significant barriers for diagnostic assessments. Furthermore, there are additional barriers in low-income countries in access to screening tools and standardized diagnostic tests for autism spectrum disorders that were only exacerbated during COVID-19. The Brief Observation of Symptoms of Autism instrument was developed to improve access to diagnostic assessment via telehealth during this time. The current study sought to validate the use of the Brief Observation of Symptoms of Autism within two Latin American countries. A sample of 313 children and adults from Argentina and Chile were examined. Results showed valid sensitivity and specificity scores with good fit across modules using two factors (i.e. Social Affect and Restricted, Repetitive Behaviors). Preliminary results of the current study demonstrated that the Brief Observation of Symptoms of Autism is a valid instrument for Latin American population and shows promise to be used beyond the pandemic to ease the diagnostic process. This is a collaborative work with BRINCAR Parent Association, who defined the need in our country to run the validation of Brief Observation of Symptoms of Autism and gave us support as the stakeholders at Lancet Commission. En ligne : https://dx.doi.org/10.1177/13623613241291098 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=552 [article] The Brief Observation of Symptoms of Autism: Validation study in a Latin American sample [texte imprimé] / Nora GRANANA, Auteur ; Francisco ASTORINO, Auteur ; Alba RICHAUDEAU, Auteur ; Lucas COSTA, Auteur ; Elena FERNANDEZ DE CARRERA, Auteur ; Valeria NANCLARES, Auteur ; Kristin SOHL, Auteur ; null NULL, Auteur . - p.896-906. Langues : Anglais (eng) in Autism > 29-4 (April 2025) . - p.896-906 Mots-clés : ADOS  American  assessment  autism  BOSA  diagnostic  Latin Index. décimale : PER Périodiques Résumé : Autism spectrum disorder presents as a multifaceted condition characterized by pronounced impairments in social communication and behavioral patterns. Diagnosis hinges upon the expertise of clinicians, comprehensive developmental history, and observation of specific behavioral markers. However, in low-income countries, access to screening tools and standardized diagnostic tests for autism spectrum disorder remains profoundly limited. Moreover, the COVID-19 pandemic has exacerbated these challenges, rendering diagnostic protocols impractical. In response to these barriers, the Brief Observation of Symptoms of Autism instrument was developed to facilitate assessments via telehealth during the pandemic. This study aims to validate the use of the Brief Observation of Symptoms of Autism within two Latin American countries, Argentina, and Chile. A cohort of 313 spanning various age groups underwent examination. Psychometric properties of each Brief Observation of Symptoms of Autism module were scrutinized, including sensitivity and specificity against the recommended University of California at Los Angeles cutoffs. Receiver operating characteristic curve analysis yielded credible sensitivity and specificity scores for each module. Confirmatory factor analysis supported a favorable fit across modules, employing a 2-factor model distinguishing Social Affect and Restricted, Repetitive Behaviors. Preliminary findings affirm the validity of the Brief Observation of Symptoms of Autism as an effective diagnostic tool within the Latin American population. Furthermore, its potential extends beyond the pandemic, promising support in the future.Lay abstract Autism spectrum disorder is a complex condition associated with significant impairments in social communication and behavioral functioning. Diagnosis is dependent on clinician expertise, gathering of developmental history, and observation of specific behaviors. The suggested protocols include tools rendered invalid during the pandemic, which created significant barriers for diagnostic assessments. Furthermore, there are additional barriers in low-income countries in access to screening tools and standardized diagnostic tests for autism spectrum disorders that were only exacerbated during COVID-19. The Brief Observation of Symptoms of Autism instrument was developed to improve access to diagnostic assessment via telehealth during this time. The current study sought to validate the use of the Brief Observation of Symptoms of Autism within two Latin American countries. A sample of 313 children and adults from Argentina and Chile were examined. Results showed valid sensitivity and specificity scores with good fit across modules using two factors (i.e. Social Affect and Restricted, Repetitive Behaviors). Preliminary results of the current study demonstrated that the Brief Observation of Symptoms of Autism is a valid instrument for Latin American population and shows promise to be used beyond the pandemic to ease the diagnostic process. This is a collaborative work with BRINCAR Parent Association, who defined the need in our country to run the validation of Brief Observation of Symptoms of Autism and gave us support as the stakeholders at Lancet Commission. En ligne : https://dx.doi.org/10.1177/13623613241291098 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=552

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