Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction) / Kristen T. MACKENZIE ; Kelly B. BECK ; Shaun M. EACK ; Katharine N. Zeglen ; Caitlin M. CONNER ; Carla A. MAZEFSKY in Journal of Autism and Developmental Disorders, 55-2 (February 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-2 (February 2025) . - p.428-439 Titre : Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction) : Journal of Autism and Developmental Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Kristen T. MACKENZIE, Auteur ; Kelly B. BECK, Auteur ; Shaun M. EACK, Auteur ; Katharine N. Zeglen, Auteur ; Caitlin M. CONNER, Auteur ; Carla A. MAZEFSKY, Auteur Article en page(s) : p.428-439 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Employment, social relationships, and autonomy are priorities to people with intellectual and developmental disabilities (IDDs). However, few validated measures exist to systematically assess these key adult outcomes in this population. This research includes first steps to develop self- and proxy report measures of life outcomes for adults with IDDs-the Relationships, Employment, Autonomy, and Life Satisfaction (REALS). A literature search identified existing adult outcome measures, and comparison of their domains informed initial conceptual model development. External consultants revised the model, and items were generated. Autistic adults (n = 15), adults with other IDDs (n = 7), caregivers of autistic adults (n = 13), and caregivers of adults with other IDDs (n = 10) completed in-depth cognitive interviews to assess comprehension of items and response categories, factors influencing how participants respond to items, and the inclusiveness of the item pool. A final conceptual model was generated with three subdomains (social relationships, employment, and autonomy), including assessment of life satisfaction within each domain. Cognitive interviews revealed that response set restructuring and item-level revisions were needed to capture the complexity of adult life and make the measure more accessible across a range of abilities. This study developed a conceptual model of relationships, work, and autonomy specific to adults with IDDs. Future work will involve collecting data from 800?+?self-reporters with IDDs and 800?+?caregivers of adults with IDDs to conduct psychometric analyses. Improving measurement in this area is critical to better understanding the needs of adults with IDDs and improving services available to them. En ligne : https://doi.org/10.1007/s10803-023-06219-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=548 [article] Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction) : Journal of Autism and Developmental Disorders [Texte imprimé et/ou numérique] / Kristen T. MACKENZIE, Auteur ; Kelly B. BECK, Auteur ; Shaun M. EACK, Auteur ; Katharine N. Zeglen, Auteur ; Caitlin M. CONNER, Auteur ; Carla A. MAZEFSKY, Auteur . - p.428-439. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-2 (February 2025) . - p.428-439 Index. décimale : PER Périodiques Résumé : Employment, social relationships, and autonomy are priorities to people with intellectual and developmental disabilities (IDDs). However, few validated measures exist to systematically assess these key adult outcomes in this population. This research includes first steps to develop self- and proxy report measures of life outcomes for adults with IDDs-the Relationships, Employment, Autonomy, and Life Satisfaction (REALS). A literature search identified existing adult outcome measures, and comparison of their domains informed initial conceptual model development. External consultants revised the model, and items were generated. Autistic adults (n = 15), adults with other IDDs (n = 7), caregivers of autistic adults (n = 13), and caregivers of adults with other IDDs (n = 10) completed in-depth cognitive interviews to assess comprehension of items and response categories, factors influencing how participants respond to items, and the inclusiveness of the item pool. A final conceptual model was generated with three subdomains (social relationships, employment, and autonomy), including assessment of life satisfaction within each domain. Cognitive interviews revealed that response set restructuring and item-level revisions were needed to capture the complexity of adult life and make the measure more accessible across a range of abilities. This study developed a conceptual model of relationships, work, and autonomy specific to adults with IDDs. Future work will involve collecting data from 800?+?self-reporters with IDDs and 800?+?caregivers of adults with IDDs to conduct psychometric analyses. Improving measurement in this area is critical to better understanding the needs of adults with IDDs and improving services available to them. En ligne : https://doi.org/10.1007/s10803-023-06219-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=548

The Relationships, Employment, Autonomy, and Life Satisfaction (REALS) Measures for Autistic Adults and Adults With Other Intellectual and Developmental Disabilities: Psychometric Testing of the Self-Report and Proxy Versions / Caitlin M. CONNER in Autism Research, 18-3 (March 2025)  

Public ISBD [article]  inAutism Research > 18-3 (March 2025) . - p.583-603 Titre : The Relationships, Employment, Autonomy, and Life Satisfaction (REALS) Measures for Autistic Adults and Adults With Other Intellectual and Developmental Disabilities: Psychometric Testing of the Self-Report and Proxy Versions Type de document : Texte imprimé et/ou numérique Auteurs : Caitlin M. CONNER, Auteur ; Lan YU, Auteur ; Kristen T. MACKENZIE, Auteur ; Katharine N. Zeglen, Auteur ; Elizabeth L. RUTENBERG, Auteur ; Paul A. PILKONIS, Auteur ; Shaun M. EACK, Auteur ; Carla A. MAZEFSKY, Auteur Article en page(s) : p.583-603 Langues : Anglais (eng) Mots-clés : adult outcomes  autism  intellectual and developmental disabilities  measurement Index. décimale : PER Périodiques Résumé : ABSTRACT Research and clinical work demonstrate that adults with intellectual and developmental disabilities (IDDs; including autistic adults and adults with other IDDs) struggle with key outcomes in adult life, including social relationships, employment, autonomy, and life satisfaction. However, few validated measures exist to measure these outcomes in adults with IDDs. The Relationships, Employment, Autonomy, and Life Satisfaction (REALS) Measures were created using methods developed by the Patient-Reported Outcomes Measurement Information System (PROMIS) to assess these outcomes. Large item pools were generated for the four domains, and, in field testing, 875 adults with IDDs (90% autistic; 18.4% with intellectual disability or a non-autism IDD) and 911 proxy reporters (caregivers; 79% autistic; 48.3% with intellectual disability or a non-autism IDD) completed 108 and 74 items, respectively, using response options capturing frequency, level of support needed, and satisfaction. The structure and item content of the REALS Measures were determined through an iterative process using both classical test theory and item response theory analyses. The final versions include 19 self-report and 14 proxy-report measures, with a range of 3 to 14 items each. The measures have excellent psychometric properties, high precision, and acceptable respondent burden. Thus, they are applicable for service provision, clinical, and research arenas for autistic adults and adults with other IDDs, though additional testing in IDD is warranted and evidence supporting self-report use in IDD is more limited. En ligne : https://doi.org/10.1002/aur.70002 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=550 [article] The Relationships, Employment, Autonomy, and Life Satisfaction (REALS) Measures for Autistic Adults and Adults With Other Intellectual and Developmental Disabilities: Psychometric Testing of the Self-Report and Proxy Versions [Texte imprimé et/ou numérique] / Caitlin M. CONNER, Auteur ; Lan YU, Auteur ; Kristen T. MACKENZIE, Auteur ; Katharine N. Zeglen, Auteur ; Elizabeth L. RUTENBERG, Auteur ; Paul A. PILKONIS, Auteur ; Shaun M. EACK, Auteur ; Carla A. MAZEFSKY, Auteur . - p.583-603. Langues : Anglais (eng) in Autism Research > 18-3 (March 2025) . - p.583-603 Mots-clés : adult outcomes  autism  intellectual and developmental disabilities  measurement Index. décimale : PER Périodiques Résumé : ABSTRACT Research and clinical work demonstrate that adults with intellectual and developmental disabilities (IDDs; including autistic adults and adults with other IDDs) struggle with key outcomes in adult life, including social relationships, employment, autonomy, and life satisfaction. However, few validated measures exist to measure these outcomes in adults with IDDs. The Relationships, Employment, Autonomy, and Life Satisfaction (REALS) Measures were created using methods developed by the Patient-Reported Outcomes Measurement Information System (PROMIS) to assess these outcomes. Large item pools were generated for the four domains, and, in field testing, 875 adults with IDDs (90% autistic; 18.4% with intellectual disability or a non-autism IDD) and 911 proxy reporters (caregivers; 79% autistic; 48.3% with intellectual disability or a non-autism IDD) completed 108 and 74 items, respectively, using response options capturing frequency, level of support needed, and satisfaction. The structure and item content of the REALS Measures were determined through an iterative process using both classical test theory and item response theory analyses. The final versions include 19 self-report and 14 proxy-report measures, with a range of 3 to 14 items each. The measures have excellent psychometric properties, high precision, and acceptable respondent burden. Thus, they are applicable for service provision, clinical, and research arenas for autistic adults and adults with other IDDs, though additional testing in IDD is warranted and evidence supporting self-report use in IDD is more limited. En ligne : https://doi.org/10.1002/aur.70002 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=550

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