Assess the Fidelity, Validity and Responsiveness of the Brief Observation of Social Communication Change (BOSCC) to Measure Changes in the Social Interactions of Preschool Children With Autism Spectrum Disorder / Agathe JAY in Autism, 30-7 (July 2026)  

Public ISBD [article]  inAutism > 30-7 (July 2026) . - p.1863-1878 Titre : Assess the Fidelity, Validity and Responsiveness of the Brief Observation of Social Communication Change (BOSCC) to Measure Changes in the Social Interactions of Preschool Children With Autism Spectrum Disorder Type de document : texte imprimé Auteurs : Agathe JAY, Auteur ; Lucie JUREK, Auteur ; Riham HAMADEH, Auteur ; Marie-Joëlle OREVE, Auteur ; Carmen M. SCHRÖDER, Auteur ; Véronique DELVENNE, Auteur ; Sandrine SONIE, Auteur ; Bruno FALISSARD, Auteur ; Olivia FEBVEY-COMBES, Auteur ; Mario SPERANZA, Auteur ; Marie-Maude GEOFFRAY, Auteur ; null NULL, Auteur Article en page(s) : p.1863-1878 Langues : Anglais (eng) Mots-clés : assess  autism spectrum disorder  fidelity  responsiveness  validity Index. décimale : PER Périodiques Résumé : Accurately measuring changes in core autism symptoms following early intervention is challenging. The Brief Observation of Social Communication Change (BOSCC) is a promising tool for assessing social interactions in preschoolers with autism spectrum disorder (ASD). However, data on its responsiveness remain limited, warranting validation to support its use in evaluating treatment-related changes. This study aimed to assess the reliability, validity, and sensitivity to change of the BOSCC based on international recommendations from the COSMIN expert group. The BOSCC was rated using 414 video observations from a large multicenter randomized controlled trial including 177 preschoolers with ASD between 19 and 36 months. Videos were coded using the original BOSCC protocol by trained, blinded raters. Analyses addressed reliability, structural and convergent validity, and responsiveness over a 2-year follow-up. Interrater, intrarater, and test–retest reliability were consistently high, with good internal consistency (Cronbach’s α = 0.88–0.98). Factor analysis supported a three-factor structure. Convergent validity was modest with Autism Diagnostic Observation Scale (ADOS) change scores (r = 0.05–0.20) but stronger with global ratings of improvement on the Clinical Global Impression–Improvement (CGI-I; r = 0.40–0.60, p < 0.001). ROC analyses confirmed acceptable to good responsiveness when anchored to the CGI-I, but poor discrimination relative to the ADOS. The BOSCC is a reliable and responsive measure of change in preschoolers with ASD. Its naturalistic format supports its use as an outcome measure in early intervention trials. Establishing thresholds for clinically meaningful change will be a critical next step for both research and clinical practice.Lay Abstract Early intervention may improve social interaction and communication in young children with autism spectrum disorder (ASD). However, it is often difficult to measure changes in core autism symptoms over time. Many commonly used assessment tools were developed for diagnosis and are not always sensitive to treatment-related change. The Brief Observation of Social Communication Change (BOSCC) was specifically designed to address this gap by using short, naturalistic observations of children’s social communication. This study examined how well the BOSCC works as a tool to capture change. We assessed its reliability (whether it gives consistent results), validity (whether it measures what it is intended to measure), and responsiveness (whether it can detect change over time). The study included 414 video observations from a large multicenter randomized controlled trial involving 177 preschool children with ASD, aged 19–36 months, followed up for over a 2-year period. Videos were rated by trained, independent observers using the original BOSCC coding system. Results showed that BOSCC is a highly reliable measure, with strong agreement between different raters and good consistency over time. The structure of the scale was supported, and BOSCC scores were meaningfully related to clinicians’ overall judgments of improvement. In contrast, changes in BOSCC scores were less closely related to changes measured by standard diagnostic tools. Overall, these findings support the BOSCC as a useful and sensitive outcome measure for evaluating change in early autism interventions. Future research should define thresholds for clinically meaningful change to strengthen its use in research, clinical practice, and service evaluation. En ligne : https://dx.doi.org/10.1177/13623613261442618 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590 [article] Assess the Fidelity, Validity and Responsiveness of the Brief Observation of Social Communication Change (BOSCC) to Measure Changes in the Social Interactions of Preschool Children With Autism Spectrum Disorder [texte imprimé] / Agathe JAY, Auteur ; Lucie JUREK, Auteur ; Riham HAMADEH, Auteur ; Marie-Joëlle OREVE, Auteur ; Carmen M. SCHRÖDER, Auteur ; Véronique DELVENNE, Auteur ; Sandrine SONIE, Auteur ; Bruno FALISSARD, Auteur ; Olivia FEBVEY-COMBES, Auteur ; Mario SPERANZA, Auteur ; Marie-Maude GEOFFRAY, Auteur ; null NULL, Auteur . - p.1863-1878. Langues : Anglais (eng) in Autism > 30-7 (July 2026) . - p.1863-1878 Mots-clés : assess  autism spectrum disorder  fidelity  responsiveness  validity Index. décimale : PER Périodiques Résumé : Accurately measuring changes in core autism symptoms following early intervention is challenging. The Brief Observation of Social Communication Change (BOSCC) is a promising tool for assessing social interactions in preschoolers with autism spectrum disorder (ASD). However, data on its responsiveness remain limited, warranting validation to support its use in evaluating treatment-related changes. This study aimed to assess the reliability, validity, and sensitivity to change of the BOSCC based on international recommendations from the COSMIN expert group. The BOSCC was rated using 414 video observations from a large multicenter randomized controlled trial including 177 preschoolers with ASD between 19 and 36 months. Videos were coded using the original BOSCC protocol by trained, blinded raters. Analyses addressed reliability, structural and convergent validity, and responsiveness over a 2-year follow-up. Interrater, intrarater, and test–retest reliability were consistently high, with good internal consistency (Cronbach’s α = 0.88–0.98). Factor analysis supported a three-factor structure. Convergent validity was modest with Autism Diagnostic Observation Scale (ADOS) change scores (r = 0.05–0.20) but stronger with global ratings of improvement on the Clinical Global Impression–Improvement (CGI-I; r = 0.40–0.60, p < 0.001). ROC analyses confirmed acceptable to good responsiveness when anchored to the CGI-I, but poor discrimination relative to the ADOS. The BOSCC is a reliable and responsive measure of change in preschoolers with ASD. Its naturalistic format supports its use as an outcome measure in early intervention trials. Establishing thresholds for clinically meaningful change will be a critical next step for both research and clinical practice.Lay Abstract Early intervention may improve social interaction and communication in young children with autism spectrum disorder (ASD). However, it is often difficult to measure changes in core autism symptoms over time. Many commonly used assessment tools were developed for diagnosis and are not always sensitive to treatment-related change. The Brief Observation of Social Communication Change (BOSCC) was specifically designed to address this gap by using short, naturalistic observations of children’s social communication. This study examined how well the BOSCC works as a tool to capture change. We assessed its reliability (whether it gives consistent results), validity (whether it measures what it is intended to measure), and responsiveness (whether it can detect change over time). The study included 414 video observations from a large multicenter randomized controlled trial involving 177 preschool children with ASD, aged 19–36 months, followed up for over a 2-year period. Videos were rated by trained, independent observers using the original BOSCC coding system. Results showed that BOSCC is a highly reliable measure, with strong agreement between different raters and good consistency over time. The structure of the scale was supported, and BOSCC scores were meaningfully related to clinicians’ overall judgments of improvement. In contrast, changes in BOSCC scores were less closely related to changes measured by standard diagnostic tools. Overall, these findings support the BOSCC as a useful and sensitive outcome measure for evaluating change in early autism interventions. Future research should define thresholds for clinically meaningful change to strengthen its use in research, clinical practice, and service evaluation. En ligne : https://dx.doi.org/10.1177/13623613261442618 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590

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

Predictors of Parent Engagement in Part C Early Intervention for Autism: The Role of Single Parenthood and Initial Motivation / Hannah TOKISH in Autism, 30-5 (May 2026)  

Public ISBD [article]  inAutism > 30-5 (May 2026) . - p.1278-1291 Titre : Predictors of Parent Engagement in Part C Early Intervention for Autism: The Role of Single Parenthood and Initial Motivation Type de document : texte imprimé Auteurs : Hannah TOKISH, Auteur ; Brooke INGERSOLL, Auteur ; null NULL, Auteur Article en page(s) : p.1278-1291 Langues : Anglais (eng) Mots-clés : ASD  autism  early intervention  parent engagement  social communication Index. décimale : PER Périodiques Résumé : Parent engagement in early intervention supports child progress but is variable in community settings and understudied in autism populations. Prior studies have examined attendance and homework completion rather than parent participation engagement—active, independent, and responsive contribution to treatment—and it is unclear how these distinct engagement measures are related. This study examined how observationally-coded parent participation engagement during early intervention sessions, between-session practice, and attendance were interrelated in addition to the influence of sociodemographic (marital status, minoritized racial/ethnic identity, and education) and psychological characteristics (stress, self-efficacy, and motivation) on engagement. The sample included 164 parents of toddlers (16–34 months) with an autism diagnosis or early autism indicators (i.e. social communication delays) receiving services through the publicly funded Part C Early Intervention system in the United States, which serves children under 36 months with developmental delays and disabilities. Observed parent participation engagement, parent-reported between-session practice, and attendance were not significantly correlated. Only marital status significantly predicted observed parent participation engagement, such that single parents exhibited lower parent participation engagement. Low motivation predicted lower parent-reported between-session practice. No parent characteristics predicted session attendance. Results suggest that early intervention providers should consider multiple aspects of parent engagement that are influenced by different parent characteristics when assessing and promoting engagement to support child progress.Lay Abstract Parent engagement in early intervention for autism supports child progress but often varies in the community. Most research studies of parents’ engagement in intervention have examined attendance and homework completion rather than active and independent contribution to treatment during intervention sessions (e.g. participating in practice activities, sharing perspectives about at-home practice). In addition, little research has examined parent engagement in early intervention for autism, which may be higher compared to broader child psychotherapy since parents typically report high satisfaction with early intervention. To address these gaps, we examined how active engagement observed and scored by trained researchers in video-recorded early intervention sessions, parent report of how often they practice intervention strategies at home, and session attendance were related to each other. We also examined how parents’ personal (marital status, racial/ethnic identity, and education) and psychological characteristics (stress, self-efficacy, and motivation) influenced their active engagement, at-home practice, and attendance. Our sample included 164 parents of toddlers with an autism diagnosis or showing early signs of autism participating in the United States publicly funded early intervention system. We found that active engagement, at-home practice, and attendance were not related. While most parent characteristics did not influence active engagement, single parents showed lower engagement during intervention sessions. In addition, parents who reported lower motivation to change their parenting behavior reported less at-home practice. No parent characteristics influenced their session attendance. Our results suggest that active engagement, at-home practice, and attendance may represent different aspects of parent engagement. To assess and increase parent engagement in community early intervention for autism, clinicians should consider multiple signs of engagement and the influence of various parent characteristics. En ligne : https://dx.doi.org/10.1177/13623613261430568 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=585 [article] Predictors of Parent Engagement in Part C Early Intervention for Autism: The Role of Single Parenthood and Initial Motivation [texte imprimé] / Hannah TOKISH, Auteur ; Brooke INGERSOLL, Auteur ; null NULL, Auteur . - p.1278-1291. Langues : Anglais (eng) in Autism > 30-5 (May 2026) . - p.1278-1291 Mots-clés : ASD  autism  early intervention  parent engagement  social communication Index. décimale : PER Périodiques Résumé : Parent engagement in early intervention supports child progress but is variable in community settings and understudied in autism populations. Prior studies have examined attendance and homework completion rather than parent participation engagement—active, independent, and responsive contribution to treatment—and it is unclear how these distinct engagement measures are related. This study examined how observationally-coded parent participation engagement during early intervention sessions, between-session practice, and attendance were interrelated in addition to the influence of sociodemographic (marital status, minoritized racial/ethnic identity, and education) and psychological characteristics (stress, self-efficacy, and motivation) on engagement. The sample included 164 parents of toddlers (16–34 months) with an autism diagnosis or early autism indicators (i.e. social communication delays) receiving services through the publicly funded Part C Early Intervention system in the United States, which serves children under 36 months with developmental delays and disabilities. Observed parent participation engagement, parent-reported between-session practice, and attendance were not significantly correlated. Only marital status significantly predicted observed parent participation engagement, such that single parents exhibited lower parent participation engagement. Low motivation predicted lower parent-reported between-session practice. No parent characteristics predicted session attendance. Results suggest that early intervention providers should consider multiple aspects of parent engagement that are influenced by different parent characteristics when assessing and promoting engagement to support child progress.Lay Abstract Parent engagement in early intervention for autism supports child progress but often varies in the community. Most research studies of parents’ engagement in intervention have examined attendance and homework completion rather than active and independent contribution to treatment during intervention sessions (e.g. participating in practice activities, sharing perspectives about at-home practice). In addition, little research has examined parent engagement in early intervention for autism, which may be higher compared to broader child psychotherapy since parents typically report high satisfaction with early intervention. To address these gaps, we examined how active engagement observed and scored by trained researchers in video-recorded early intervention sessions, parent report of how often they practice intervention strategies at home, and session attendance were related to each other. We also examined how parents’ personal (marital status, racial/ethnic identity, and education) and psychological characteristics (stress, self-efficacy, and motivation) influenced their active engagement, at-home practice, and attendance. Our sample included 164 parents of toddlers with an autism diagnosis or showing early signs of autism participating in the United States publicly funded early intervention system. We found that active engagement, at-home practice, and attendance were not related. While most parent characteristics did not influence active engagement, single parents showed lower engagement during intervention sessions. In addition, parents who reported lower motivation to change their parenting behavior reported less at-home practice. No parent characteristics influenced their session attendance. Our results suggest that active engagement, at-home practice, and attendance may represent different aspects of parent engagement. To assess and increase parent engagement in community early intervention for autism, clinicians should consider multiple signs of engagement and the influence of various parent characteristics. En ligne : https://dx.doi.org/10.1177/13623613261430568 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=585

A Qualitative Study Exploring the Acceptability of Taking Part in a Large Multicentre RCT of Medication for Anxiety in Autistic Adults (the STRATA Trial) / Alba X. REALPE in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2318-2333 Titre : A Qualitative Study Exploring the Acceptability of Taking Part in a Large Multicentre RCT of Medication for Anxiety in Autistic Adults (the STRATA Trial) Type de document : texte imprimé Auteurs : Alba X. REALPE, Auteur ; Jade Eloise NORRIS, Auteur ; Ava LORENC, Auteur ; Leonora COTTON, Auteur ; Zoe MORGAN, Auteur ; Aws SADIK, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur ; null NULL, Auteur ; David CARMICHAEL, Auteur ; Madeleine COCHRANE, Auteur ; Leonora COTTON, Auteur ; Abbie COTTRELL, Auteur ; Martin HOUSE, Auteur ; David KESSLER, Auteur ; Amanda LEWIS, Auteur ; Ava LORENC, Auteur ; Stephanie MACNEILL, Auteur ; Tim MEDLICOTT, Auteur ; Nicola MILLS, Auteur ; Maximiliano Vazquez MORALES, Auteur ; Jade Eloise NORRIS, Auteur ; Sunita PROCTER, Auteur ; Dheeraj RAI, Auteur ; Alba X REALPE, Auteur ; Jodi TAYLOR, Auteur ; Joanna THORN, Auteur ; Nicholas TURNER, Auteur ; Doug WEBB, Auteur ; Nicola WILES, Auteur ; Sarah DOUGLAS, Auteur ; Peter HALE, Auteur ; Sarah O’BRIEN, Auteur ; Amy WALKER, Auteur ; Jack WELCH, Auteur ; Claire CREE, Auteur ; Liz MCCULLAGH, Auteur ; Alex PARSONS, Auteur ; Jake ALBERTS, Auteur ; Monalisa BORA-WHITE, Auteur ; Alison CAPE, Auteur ; Victoria NIMMO-SMITH, Auteur ; Krist NOONAN, Auteur ; Dheeraj RAI, Auteur ; Aws SADIK, Auteur ; Holly SPRAY, Auteur ; Alexandra YOUNG, Auteur ; Gaurav BHATTARAI, Auteur ; Emma BUTLER, Auteur ; Suzee CHANG, Auteur ; Amy DAVIS, Auteur ; Laura JENKINS, Auteur ; Rose JONES, Auteur ; Laura LORD, Auteur ; Ariska BARBOSA, Auteur ; Didiana DOS SANTOS, Auteur ; Abhishek JHA, Auteur ; Sujata SONI, Auteur ; Kerry FLAHIVE, Auteur ; Emma HORNE, Auteur ; Liz LENAGHAN, Auteur ; Rani PATHANIA, Auteur ; Hafsa SHEIKH, Auteur ; Katie EWART, Auteur ; Anneka NEWMAN, Auteur ; Karen POON, Auteur ; Prasanna RAJBHANDARI, Auteur ; Amy GREEN, Auteur ; Brionne THOMAS, Auteur ; Regi ALEXANDER, Auteur ; Ayomipo Jeremiah AMIOLA, Auteur ; Peter LANGDON, Auteur ; Inder SAWHNEY, Auteur ; Lucy ALLENDER, Auteur ; Wendy ANDRUSJAK, Auteur ; Conor DAVIDSON, Auteur ; Sana FATIMA, Auteur ; Sharmistha GHOSH, Auteur ; Lisa HACKNEY, Auteur ; Alwyn KAM, Auteur ; Keri LODGE, Auteur ; Charlotte MACKNEY-HUDSON, Auteur ; Sarah PARKINSON, Auteur ; Holly LIVESEY, Auteur ; Eleni TSAPPIS, Auteur ; Sharon AUJLA, Auteur ; Sarah BAILLON, Auteur ; Meera BENTLEY, Auteur ; Asit BISWAS, Auteur ; Joy Fellows DAVIS, Auteur ; Ganesh KUNJITHAPATHAM, Auteur ; Rebekah POLE, Auteur ; Samuel TROMANS, Auteur ; Regi ALEXANDER, Auteur ; Catherine HAIG, Auteur ; Stephanie HOWARD, Auteur ; Ayomipo Jeremiah AMIOLA, Auteur ; Charlotte MAPLANKA, Auteur ; Gisela PEREZ-OLIVAS, Auteur ; Jack CHESHIRE, Auteur ; Jacqueline DZIEWANOWSKA, Auteur ; Angela HOLLAND, Auteur ; Puja KOCHHAR, Auteur ; Sowmy MURICKAL, Auteur ; Susan SMITH, Auteur ; Joshua CUDWORTH, Auteur ; Solveig HASELBACH, Auteur ; Jeremy MUDUNKOTUWE, Auteur ; Raja MUKHERJEE, Auteur ; Maria DEL PICCOLO, Auteur ; Ashkan SOWHANI, Auteur ; Emma GLASSON, Auteur ; Katherine HATCH, Auteur ; Helen LEONARD, Auteur ; Sergio STARKSTEIN, Auteur ; Bradleigh HAYHOW, Auteur ; Eleanor TEO, Auteur ; Don HULME, Auteur ; Katrina ORR, Auteur ; Ailsa RUSSELL, Auteur ; Traolach BRUGHA, Auteur ; Zoe MORGAN, Auteur ; David BALDWIN, Auteur ; Peter LANGDON, Auteur ; Jemma REGAN, Auteur ; Jonathan MARTIN, Auteur ; Alice MADDEN, Auteur ; Kathryn JANES, Auteur Article en page(s) : p.2318-2333 Langues : Anglais (eng) Mots-clés : autism  anxiety  randomisation  blinding  RCT  neurodevelopmental conditions  research participation  underserved populations  trial methodology  qualitative research Index. décimale : PER Périodiques Résumé : Autistic adults experience significant physical and mental health inequities yet remain underrepresented in clinical research, with few randomised controlled trials to guide care. Randomised controlled trials (RCTs) of selective serotonin reuptake inhibitors (SSRIs) are limited, underpowered, and rarely focused on anxiety. Anticipating recruitment challenges in a large RCT (“STRATA”) evaluating sertraline for anxiety in autistic adults, we embedded qualitative research to support recruitment, retention, and monitoring trial acceptability. We organised our findings into the theoretical framework of acceptability (TFA) constructs to assess the acceptability of trial design and delivery for autistic adults. We conducted 64 interviews with autistic adults at different trial stages. Data were analysed thematically and mapped to the seven TFA constructs. Participants considered involvement in a blinded medication RCT acceptable across the TFA domains, which they weighed differently when reflecting on anticipated versus experienced aspects of participation. STRATA was a low-burden, ethically sound, and methodologically coherent study for most participants, who reported minimal trade-offs, potential benefits, and self-efficacy in managing anxiety and research participation. Acceptability of trial participation is dynamic and multidimensional, which can be enhanced by meaningful involvement of autistic people throughout the research cycle, accessible participant information design, and responsive ongoing engagement.Lay Abstract Autistic adults often experience poorer physical and mental health than the general population. Yet they are rarely included in clinical research. There have been very few high-quality studies (RCTs) testing medications for anxiety in this group. Most existing studies are small and focus on other outcomes. They don’t provide clear guidance for care. To help address this gap, the STRATA trial tested whether the medication sertraline (an SSRI) can reduce anxiety in autistic adults. Recruiting participants for such trials can be challenging. We included a qualitative study to better understand what helps or hinders people from joining and staying in the trial. We aimed to explore what aspects of the STRATA trial made it easier or more appealing for autistic adults to take part. We used a framework called the theoretical framework of acceptability (TFA) to define acceptability in this context. We interviewed 64 autistic adults at different stages of the trial, including 2 who chose not to take part. Most participants found the trial acceptable when assessed against the seven aspects of the TFA (i.e., how someone feels about taking part, how much effort is needed, whether taking part fits with a person’s values, how well someone understands the study, what someone may have to give up, whether the study is likely to help, and how confident someone feels about taking part). In summary, they felt positive about taking part. They thought the study was ethical and easy to understand and believed it could benefit them. Many also felt more confident in managing their anxiety and contributing to research. STRATA is one of the largest studies of its kind; 318 autistic adults took part across the United Kingdom and Australia. The trial had a very high retention rate. Ninety-two per cent of participants stayed until the main outcome point, and 87% completed the full 52 weeks. How acceptable clinical trials like STRATA are may change during their course, and researchers need to be responsive. To do this well, researchers should involve autistic people meaningfully throughout the research process and from an early stage. Researchers also need to respect individual communication needs and provide clear and accessible information. These approaches were central to STRATA and supported by other studies. En ligne : https://dx.doi.org/10.1177/13623613261466306 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] A Qualitative Study Exploring the Acceptability of Taking Part in a Large Multicentre RCT of Medication for Anxiety in Autistic Adults (the STRATA Trial) [texte imprimé] / Alba X. REALPE, Auteur ; Jade Eloise NORRIS, Auteur ; Ava LORENC, Auteur ; Leonora COTTON, Auteur ; Zoe MORGAN, Auteur ; Aws SADIK, Auteur ; Dheeraj RAI, Auteur ; Nicola MILLS, Auteur ; null NULL, Auteur ; David CARMICHAEL, Auteur ; Madeleine COCHRANE, Auteur ; Leonora COTTON, Auteur ; Abbie COTTRELL, Auteur ; Martin HOUSE, Auteur ; David KESSLER, Auteur ; Amanda LEWIS, Auteur ; Ava LORENC, Auteur ; Stephanie MACNEILL, Auteur ; Tim MEDLICOTT, Auteur ; Nicola MILLS, Auteur ; Maximiliano Vazquez MORALES, Auteur ; Jade Eloise NORRIS, Auteur ; Sunita PROCTER, Auteur ; Dheeraj RAI, Auteur ; Alba X REALPE, Auteur ; Jodi TAYLOR, Auteur ; Joanna THORN, Auteur ; Nicholas TURNER, Auteur ; Doug WEBB, Auteur ; Nicola WILES, Auteur ; Sarah DOUGLAS, Auteur ; Peter HALE, Auteur ; Sarah O’BRIEN, Auteur ; Amy WALKER, Auteur ; Jack WELCH, Auteur ; Claire CREE, Auteur ; Liz MCCULLAGH, Auteur ; Alex PARSONS, Auteur ; Jake ALBERTS, Auteur ; Monalisa BORA-WHITE, Auteur ; Alison CAPE, Auteur ; Victoria NIMMO-SMITH, Auteur ; Krist NOONAN, Auteur ; Dheeraj RAI, Auteur ; Aws SADIK, Auteur ; Holly SPRAY, Auteur ; Alexandra YOUNG, Auteur ; Gaurav BHATTARAI, Auteur ; Emma BUTLER, Auteur ; Suzee CHANG, Auteur ; Amy DAVIS, Auteur ; Laura JENKINS, Auteur ; Rose JONES, Auteur ; Laura LORD, Auteur ; Ariska BARBOSA, Auteur ; Didiana DOS SANTOS, Auteur ; Abhishek JHA, Auteur ; Sujata SONI, Auteur ; Kerry FLAHIVE, Auteur ; Emma HORNE, Auteur ; Liz LENAGHAN, Auteur ; Rani PATHANIA, Auteur ; Hafsa SHEIKH, Auteur ; Katie EWART, Auteur ; Anneka NEWMAN, Auteur ; Karen POON, Auteur ; Prasanna RAJBHANDARI, Auteur ; Amy GREEN, Auteur ; Brionne THOMAS, Auteur ; Regi ALEXANDER, Auteur ; Ayomipo Jeremiah AMIOLA, Auteur ; Peter LANGDON, Auteur ; Inder SAWHNEY, Auteur ; Lucy ALLENDER, Auteur ; Wendy ANDRUSJAK, Auteur ; Conor DAVIDSON, Auteur ; Sana FATIMA, Auteur ; Sharmistha GHOSH, Auteur ; Lisa HACKNEY, Auteur ; Alwyn KAM, Auteur ; Keri LODGE, Auteur ; Charlotte MACKNEY-HUDSON, Auteur ; Sarah PARKINSON, Auteur ; Holly LIVESEY, Auteur ; Eleni TSAPPIS, Auteur ; Sharon AUJLA, Auteur ; Sarah BAILLON, Auteur ; Meera BENTLEY, Auteur ; Asit BISWAS, Auteur ; Joy Fellows DAVIS, Auteur ; Ganesh KUNJITHAPATHAM, Auteur ; Rebekah POLE, Auteur ; Samuel TROMANS, Auteur ; Regi ALEXANDER, Auteur ; Catherine HAIG, Auteur ; Stephanie HOWARD, Auteur ; Ayomipo Jeremiah AMIOLA, Auteur ; Charlotte MAPLANKA, Auteur ; Gisela PEREZ-OLIVAS, Auteur ; Jack CHESHIRE, Auteur ; Jacqueline DZIEWANOWSKA, Auteur ; Angela HOLLAND, Auteur ; Puja KOCHHAR, Auteur ; Sowmy MURICKAL, Auteur ; Susan SMITH, Auteur ; Joshua CUDWORTH, Auteur ; Solveig HASELBACH, Auteur ; Jeremy MUDUNKOTUWE, Auteur ; Raja MUKHERJEE, Auteur ; Maria DEL PICCOLO, Auteur ; Ashkan SOWHANI, Auteur ; Emma GLASSON, Auteur ; Katherine HATCH, Auteur ; Helen LEONARD, Auteur ; Sergio STARKSTEIN, Auteur ; Bradleigh HAYHOW, Auteur ; Eleanor TEO, Auteur ; Don HULME, Auteur ; Katrina ORR, Auteur ; Ailsa RUSSELL, Auteur ; Traolach BRUGHA, Auteur ; Zoe MORGAN, Auteur ; David BALDWIN, Auteur ; Peter LANGDON, Auteur ; Jemma REGAN, Auteur ; Jonathan MARTIN, Auteur ; Alice MADDEN, Auteur ; Kathryn JANES, Auteur . - p.2318-2333. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2318-2333 Mots-clés : autism  anxiety  randomisation  blinding  RCT  neurodevelopmental conditions  research participation  underserved populations  trial methodology  qualitative research Index. décimale : PER Périodiques Résumé : Autistic adults experience significant physical and mental health inequities yet remain underrepresented in clinical research, with few randomised controlled trials to guide care. Randomised controlled trials (RCTs) of selective serotonin reuptake inhibitors (SSRIs) are limited, underpowered, and rarely focused on anxiety. Anticipating recruitment challenges in a large RCT (“STRATA”) evaluating sertraline for anxiety in autistic adults, we embedded qualitative research to support recruitment, retention, and monitoring trial acceptability. We organised our findings into the theoretical framework of acceptability (TFA) constructs to assess the acceptability of trial design and delivery for autistic adults. We conducted 64 interviews with autistic adults at different trial stages. Data were analysed thematically and mapped to the seven TFA constructs. Participants considered involvement in a blinded medication RCT acceptable across the TFA domains, which they weighed differently when reflecting on anticipated versus experienced aspects of participation. STRATA was a low-burden, ethically sound, and methodologically coherent study for most participants, who reported minimal trade-offs, potential benefits, and self-efficacy in managing anxiety and research participation. Acceptability of trial participation is dynamic and multidimensional, which can be enhanced by meaningful involvement of autistic people throughout the research cycle, accessible participant information design, and responsive ongoing engagement.Lay Abstract Autistic adults often experience poorer physical and mental health than the general population. Yet they are rarely included in clinical research. There have been very few high-quality studies (RCTs) testing medications for anxiety in this group. Most existing studies are small and focus on other outcomes. They don’t provide clear guidance for care. To help address this gap, the STRATA trial tested whether the medication sertraline (an SSRI) can reduce anxiety in autistic adults. Recruiting participants for such trials can be challenging. We included a qualitative study to better understand what helps or hinders people from joining and staying in the trial. We aimed to explore what aspects of the STRATA trial made it easier or more appealing for autistic adults to take part. We used a framework called the theoretical framework of acceptability (TFA) to define acceptability in this context. We interviewed 64 autistic adults at different stages of the trial, including 2 who chose not to take part. Most participants found the trial acceptable when assessed against the seven aspects of the TFA (i.e., how someone feels about taking part, how much effort is needed, whether taking part fits with a person’s values, how well someone understands the study, what someone may have to give up, whether the study is likely to help, and how confident someone feels about taking part). In summary, they felt positive about taking part. They thought the study was ethical and easy to understand and believed it could benefit them. Many also felt more confident in managing their anxiety and contributing to research. STRATA is one of the largest studies of its kind; 318 autistic adults took part across the United Kingdom and Australia. The trial had a very high retention rate. Ninety-two per cent of participants stayed until the main outcome point, and 87% completed the full 52 weeks. How acceptable clinical trials like STRATA are may change during their course, and researchers need to be responsive. To do this well, researchers should involve autistic people meaningfully throughout the research process and from an early stage. Researchers also need to respect individual communication needs and provide clear and accessible information. These approaches were central to STRATA and supported by other studies. En ligne : https://dx.doi.org/10.1177/13623613261466306 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

Scaling Up Caregiver Support for Autism in Public Health Care: Adoption, Implementation Pace and Sustainability of a Train-the-Trainer Model for the WHO Caregiver Skills Training in Italy / Erica SALOMONE in Autism, 30-9 (September 2026)  

Public ISBD [article]  inAutism > 30-9 (September 2026) . - p.2381-2400 Titre : Scaling Up Caregiver Support for Autism in Public Health Care: Adoption, Implementation Pace and Sustainability of a Train-the-Trainer Model for the WHO Caregiver Skills Training in Italy Type de document : texte imprimé Auteurs : Erica SALOMONE, Auteur ; Giulia DE LEONARDIS, Auteur ; Camilla FERRANTE, Auteur ; Francesca STARTARI, Auteur ; Letizia GILA, Auteur ; null NULL, Auteur ; Maria Luisa SCATTONI, Auteur Article en page(s) : p.2381-2400 Langues : Anglais (eng) Mots-clés : WHO caregiver skills training  train-the-trainer  cascade training  implementation science  autism  CFIR Index. décimale : PER Périodiques Résumé : Train-the-Trainer (TTT) models can scale parent-mediated interventions (PMIs) in public health care, yet evidence on large-scale implementation remains limited. This study reports the implementation of an adapted TTT model for the WHO Caregiver Skills Training (CST) within the Italian National Health Service, evaluating adoption, acceptability, feasibility and sustainability. Twenty-eight clinicians from 10 Regions undertook the four-phase TTT. A mixed-methods design combined surveys with focus groups, analyzed using the Consolidated Framework for Implementation Research (CFIR). Twenty trainees (71%) qualified as Master Trainers (MTs), and 17 of these (85%) trained facilitators; 60% of MTs achieved full fidelity within the expected timeline. Satisfaction ratings were high, whereas feasibility ratings were mid-range. Implementation inhibitors clustered in the CFIR Inner setting (available resources, leadership engagement), Outer setting (lack of formal recognition), and Process (training model’s intensity structure) domains. Accelerators included Characteristics of individuals (motivation, readiness to change), Intervention characteristics (responsiveness to families’ needs, accessibility) and Inner Setting features (integration within existing care pathways). Overall, the adapted TTT was acceptable and supported early adoption and fidelity; however, lower feasibility for select capacity-building components and multilevel barriers indicate that sustained integration will require stronger organizational support and policy endorsement. Proposed adaptations offer an adaptable framework for global efforts to expand caregiver support within public health systems.Lay Abstract Families of autistic children often benefit from programs that teach caregivers practical skills to support their child’s development. However, these programs can be hard to implement in public health systems due to a shortage of trained professionals and because interventions may not align with existing service structures. To overcome these challenges, the Italian National Institute of Health has implemented the World Health Organization’s Caregiver Skills Training (CST) program through initiatives funded by the National Autism Fund. To ensure the program could be effectively adopted within the Italian public health context, we applied a “Train-the-Trainer” model. This approach trains experienced clinicians to become “Master Trainers,” who in turn train other professionals to deliver the program to families, supporting scalability and sustainability within the system. In our study, 28 clinicians from 10 regions of Italy took part in a four-step training process. Most (20 trainees) completed the program successfully, and many (17 trainees) went on to train facilitators. Surveys and focus groups examined how well the program was taken up, how acceptable it felt, how doable it was in routine services, and what might help it last. Trainers reported high satisfaction with the program, although some faced difficulties such as limited institutional support. Factors that helped implementation included strong motivation and the program’s perceived usefulness for families. Barriers included organizational challenges and the need for formal recognition of the program. Overall, this approach looks promising for bringing CST into public services, but durable, wider use will require stronger organizational support and policy endorsement. The proposed adjustments offer a practical path to expand caregiver support and offer methods that can be transferred to public health systems in other countries. En ligne : https://dx.doi.org/10.1177/13623613261469910 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592 [article] Scaling Up Caregiver Support for Autism in Public Health Care: Adoption, Implementation Pace and Sustainability of a Train-the-Trainer Model for the WHO Caregiver Skills Training in Italy [texte imprimé] / Erica SALOMONE, Auteur ; Giulia DE LEONARDIS, Auteur ; Camilla FERRANTE, Auteur ; Francesca STARTARI, Auteur ; Letizia GILA, Auteur ; null NULL, Auteur ; Maria Luisa SCATTONI, Auteur . - p.2381-2400. Langues : Anglais (eng) in Autism > 30-9 (September 2026) . - p.2381-2400 Mots-clés : WHO caregiver skills training  train-the-trainer  cascade training  implementation science  autism  CFIR Index. décimale : PER Périodiques Résumé : Train-the-Trainer (TTT) models can scale parent-mediated interventions (PMIs) in public health care, yet evidence on large-scale implementation remains limited. This study reports the implementation of an adapted TTT model for the WHO Caregiver Skills Training (CST) within the Italian National Health Service, evaluating adoption, acceptability, feasibility and sustainability. Twenty-eight clinicians from 10 Regions undertook the four-phase TTT. A mixed-methods design combined surveys with focus groups, analyzed using the Consolidated Framework for Implementation Research (CFIR). Twenty trainees (71%) qualified as Master Trainers (MTs), and 17 of these (85%) trained facilitators; 60% of MTs achieved full fidelity within the expected timeline. Satisfaction ratings were high, whereas feasibility ratings were mid-range. Implementation inhibitors clustered in the CFIR Inner setting (available resources, leadership engagement), Outer setting (lack of formal recognition), and Process (training model’s intensity structure) domains. Accelerators included Characteristics of individuals (motivation, readiness to change), Intervention characteristics (responsiveness to families’ needs, accessibility) and Inner Setting features (integration within existing care pathways). Overall, the adapted TTT was acceptable and supported early adoption and fidelity; however, lower feasibility for select capacity-building components and multilevel barriers indicate that sustained integration will require stronger organizational support and policy endorsement. Proposed adaptations offer an adaptable framework for global efforts to expand caregiver support within public health systems.Lay Abstract Families of autistic children often benefit from programs that teach caregivers practical skills to support their child’s development. However, these programs can be hard to implement in public health systems due to a shortage of trained professionals and because interventions may not align with existing service structures. To overcome these challenges, the Italian National Institute of Health has implemented the World Health Organization’s Caregiver Skills Training (CST) program through initiatives funded by the National Autism Fund. To ensure the program could be effectively adopted within the Italian public health context, we applied a “Train-the-Trainer” model. This approach trains experienced clinicians to become “Master Trainers,” who in turn train other professionals to deliver the program to families, supporting scalability and sustainability within the system. In our study, 28 clinicians from 10 regions of Italy took part in a four-step training process. Most (20 trainees) completed the program successfully, and many (17 trainees) went on to train facilitators. Surveys and focus groups examined how well the program was taken up, how acceptable it felt, how doable it was in routine services, and what might help it last. Trainers reported high satisfaction with the program, although some faced difficulties such as limited institutional support. Factors that helped implementation included strong motivation and the program’s perceived usefulness for families. Barriers included organizational challenges and the need for formal recognition of the program. Overall, this approach looks promising for bringing CST into public services, but durable, wider use will require stronger organizational support and policy endorsement. The proposed adjustments offer a practical path to expand caregiver support and offer methods that can be transferred to public health systems in other countries. En ligne : https://dx.doi.org/10.1177/13623613261469910 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=592

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

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