Applying a User-Centered Design Framework to Develop a Remote Research Assessment Protocol for a Randomized Clinical Trial for Toddlers with Early Autism Characteristics / Daina M. TAGAVI in Journal of Autism and Developmental Disorders, 55-10 (October 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-10 (October 2025) . - p.3417-3431 Titre : Applying a User-Centered Design Framework to Develop a Remote Research Assessment Protocol for a Randomized Clinical Trial for Toddlers with Early Autism Characteristics Type de document : texte imprimé Auteurs : Daina M. TAGAVI, Auteur ; Yael G. DAI, Auteur ; Natalie I. BERGER, Auteur ; Marisa PETRUCCELLI, Auteur ; Sabine E. SCOTT, Auteur ; Devon OOSTING, Auteur ; Mya HOWARD, Auteur ; Alice S. CARTER, Auteur ; Brooke R. INGERSOLL, Auteur ; Allison L. WAINER, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Wendy L. STONE, Auteur Article en page(s) : p.3417-3431 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : COVID-19 required many research teams to shift from in-person to remote assessments, which posed both procedural and theoretical challenges. While research has explored the utility of remote assessments for autism diagnosis from the perspective of families and clinicians, less is known about their application in clinical trials. This paper describes the development of a remote research assessment protocol for a randomized clinical trial focusing on the implementation of reciprocal imitation teaching (RIT) with toddlers in Part C early intervention. This project spans two phases. For Phase 1, our team developed and documented a series of steps utilizing user-centered design (UCD) strategies (e.g., recruiting potential users, creating a prototype, engaging in iterative development) for the purpose of redesigning an assessment protocol for a remote environment. For Phase 2, we examined preliminary outcomes of the redesign process. Primary end users (assessors) rated post-redesign usability and acceptability, while acceptability was examined using attrition data from secondary end users (family participants). Preliminary fidelity of implementation was also examined. The iterative redesign process allowed the research team to refine aspects of the assessment that ultimately led to promising preliminary ratings of usability, acceptability, and feasibility, as well as high fidelity. Preliminary data suggest that the redesigned assessment appears to be an acceptable, feasible, and usable tool for autism clinical trial research and that assessors can use it with fidelity. Further research is needed to examine the reliability and validity of the assessment, as well as implementation characteristics on a larger scale. En ligne : https://doi.org/10.1007/s10803-024-06455-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=568 [article] Applying a User-Centered Design Framework to Develop a Remote Research Assessment Protocol for a Randomized Clinical Trial for Toddlers with Early Autism Characteristics [texte imprimé] / Daina M. TAGAVI, Auteur ; Yael G. DAI, Auteur ; Natalie I. BERGER, Auteur ; Marisa PETRUCCELLI, Auteur ; Sabine E. SCOTT, Auteur ; Devon OOSTING, Auteur ; Mya HOWARD, Auteur ; Alice S. CARTER, Auteur ; Brooke R. INGERSOLL, Auteur ; Allison L. WAINER, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Wendy L. STONE, Auteur . - p.3417-3431. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-10 (October 2025) . - p.3417-3431 Index. décimale : PER Périodiques Résumé : COVID-19 required many research teams to shift from in-person to remote assessments, which posed both procedural and theoretical challenges. While research has explored the utility of remote assessments for autism diagnosis from the perspective of families and clinicians, less is known about their application in clinical trials. This paper describes the development of a remote research assessment protocol for a randomized clinical trial focusing on the implementation of reciprocal imitation teaching (RIT) with toddlers in Part C early intervention. This project spans two phases. For Phase 1, our team developed and documented a series of steps utilizing user-centered design (UCD) strategies (e.g., recruiting potential users, creating a prototype, engaging in iterative development) for the purpose of redesigning an assessment protocol for a remote environment. For Phase 2, we examined preliminary outcomes of the redesign process. Primary end users (assessors) rated post-redesign usability and acceptability, while acceptability was examined using attrition data from secondary end users (family participants). Preliminary fidelity of implementation was also examined. The iterative redesign process allowed the research team to refine aspects of the assessment that ultimately led to promising preliminary ratings of usability, acceptability, and feasibility, as well as high fidelity. Preliminary data suggest that the redesigned assessment appears to be an acceptable, feasible, and usable tool for autism clinical trial research and that assessors can use it with fidelity. Further research is needed to examine the reliability and validity of the assessment, as well as implementation characteristics on a larger scale. En ligne : https://doi.org/10.1007/s10803-024-06455-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=568

A Taxonomy of Reported Harms in Pediatric Autism Spectrum Disorder Screening: Provider and Parent Perspectives / Marisa PETRUCCELLI in Journal of Autism and Developmental Disorders, 52-2 (February 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-2 (February 2022) . - p.647-673 Titre : A Taxonomy of Reported Harms in Pediatric Autism Spectrum Disorder Screening: Provider and Parent Perspectives Type de document : texte imprimé Auteurs : Marisa PETRUCCELLI, Auteur ; Leah RAMELLA, Auteur ; Ana J. SCHAEFER, Auteur ; R. Christopher SHELDRICK, Auteur ; Alice S. CARTER, Auteur ; Abbey EISENHOWER, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Thomas I. MACKIE, Auteur Article en page(s) : p.647-673 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/diagnosis  Child  Child, Preschool  Early Intervention, Educational  Humans  Mass Screening  Parents  Pediatricians  Autism spectrum disorder  Harms  Healthcare providers  Qualitative methods  Screening  first-stage screeners used in this study. He conducts research related to this  instrument but receives no royalties. Dr. Carter is the cocreator of the POSI but  receives no royalties. She is also co-creator of the BITSEA, which is one of the two  first-stage screeners used in this study. Dr. Carter receives royalties on the sale  of the BITSEA, which is distributed by MAPI Research Trust. The remaining co-authors  report no conflicts of interest. Index. décimale : PER Périodiques Résumé : The U.S. Preventive Services Task Force (USPSTF) report on screening for Autism Spectrum Disorder (ASD) highlighted the need for research that examines the harms potentially associated with screening so as to assess the overall net benefit of universal screening. In response, this study engages qualitative, semi-structured interviews to generate a taxonomy outlining potential harms reported by parents and providers (pediatricians and Early Intervention providers) with experience in screening young children for ASD. Potential harms emerged including: physical, psychological, social, logistical/financial, opportunity cost, attrition, and exacerbation of non-targeted disparities. Respondents reported harms being experienced by the toddlers, parents, and providers. The harms reported highlight opportunities for providers to offer resources that mitigate the potential for these unintended consequences. En ligne : http://dx.doi.org/10.1007/s10803-021-04964-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=455 [article] A Taxonomy of Reported Harms in Pediatric Autism Spectrum Disorder Screening: Provider and Parent Perspectives [texte imprimé] / Marisa PETRUCCELLI, Auteur ; Leah RAMELLA, Auteur ; Ana J. SCHAEFER, Auteur ; R. Christopher SHELDRICK, Auteur ; Alice S. CARTER, Auteur ; Abbey EISENHOWER, Auteur ; Sarabeth BRODER-FINGERT, Auteur ; Thomas I. MACKIE, Auteur . - p.647-673. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-2 (February 2022) . - p.647-673 Mots-clés : Autism Spectrum Disorder/diagnosis  Child  Child, Preschool  Early Intervention, Educational  Humans  Mass Screening  Parents  Pediatricians  Autism spectrum disorder  Harms  Healthcare providers  Qualitative methods  Screening  first-stage screeners used in this study. He conducts research related to this  instrument but receives no royalties. Dr. Carter is the cocreator of the POSI but  receives no royalties. She is also co-creator of the BITSEA, which is one of the two  first-stage screeners used in this study. Dr. Carter receives royalties on the sale  of the BITSEA, which is distributed by MAPI Research Trust. The remaining co-authors  report no conflicts of interest. Index. décimale : PER Périodiques Résumé : The U.S. Preventive Services Task Force (USPSTF) report on screening for Autism Spectrum Disorder (ASD) highlighted the need for research that examines the harms potentially associated with screening so as to assess the overall net benefit of universal screening. In response, this study engages qualitative, semi-structured interviews to generate a taxonomy outlining potential harms reported by parents and providers (pediatricians and Early Intervention providers) with experience in screening young children for ASD. Potential harms emerged including: physical, psychological, social, logistical/financial, opportunity cost, attrition, and exacerbation of non-targeted disparities. Respondents reported harms being experienced by the toddlers, parents, and providers. The harms reported highlight opportunities for providers to offer resources that mitigate the potential for these unintended consequences. En ligne : http://dx.doi.org/10.1007/s10803-021-04964-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=455

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