Understanding and measuring caregiver-reported quality of life among minimally verbal autistic children with intellectual disability / Elizabeth A. KAPLAN-KAHN in Autism, 30-2 (February 2026)  

Public ISBD [article]  inAutism > 30-2 (February 2026) . - p.495-509 Titre : Understanding and measuring caregiver-reported quality of life among minimally verbal autistic children with intellectual disability Type de document : texte imprimé Auteurs : Elizabeth A. KAPLAN-KAHN, Auteur ; Rachel M. BENECKE, Auteur ; Laura GRAHAM HOLMES, Auteur ; Judith S. MILLER, Auteur Article en page(s) : p.495-509 Langues : Anglais (eng) Mots-clés : intellectual disability  language impairment  measurement invariance  quality of life Index. décimale : PER Périodiques Résumé : To address the dearth of literature on outcomes for autistic individuals with significant intellectual disability, researchers require validated measures to use in research. This study examined the psychometric properties of PROMIS quality-of-life caregiver-proxy scales included in the PROMIS Autism Battery–Lifespan among autistic children who are minimally verbal and with intellectual disability (MVID). We examined basic psychometric properties of the PROMIS caregiver-proxy scales and tested the scales for measurement invariance between groups of autistic children who are minimally verbal with intellectual disability and those without signficant intellectuatl disability (N = 448). We also descriptively examined feedback from caregivers regarding the appropriateness of the questions to capture meaningful outcomes for their autistic children who are minimally verbal with intellectual disability. Results indicated that some PROMIS caregiver-proxy scales (Anger, Positive Affect, and Life Satisfaction) exhibited strong psychometric evidence and content validity, but many other scales either did not demonstrate measurement invariance between groups or included a high proportion of items endorsed by caregivers as not applicable for their minimally verbal autistic child. Our findings emphasize the need for continued work developing appropriate measures for capturing meaningful outcomes among minimally verbal autistic people with significant intellectual disability.Plain Language SummaryResearchers need reliable tools to study outcomes for autistic individuals with significant intellectual disability. This study looked at the PROMIS caregiver-proxy scales from the PROMIS Autism Battery–Lifespan for minimally verbal autistic children with intellectual disability. These scales were made to capture aspects of quality of life important for people on the autism spectrum. We compared responses from parents of autistic children with and without significant cognitive and language issues and checked if the questions were suitable for children with high support needs. Results showed that some scales (Anger, Positive Affect, and Life Satisfaction) worked well, but others did not work as well for this group. Our study highlights the need to develop better tools to measure meaningful outcomes for autistic people with the highest support needs. En ligne : https://dx.doi.org/10.1177/13623613251394995 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=579 [article] Understanding and measuring caregiver-reported quality of life among minimally verbal autistic children with intellectual disability [texte imprimé] / Elizabeth A. KAPLAN-KAHN, Auteur ; Rachel M. BENECKE, Auteur ; Laura GRAHAM HOLMES, Auteur ; Judith S. MILLER, Auteur . - p.495-509. Langues : Anglais (eng) in Autism > 30-2 (February 2026) . - p.495-509 Mots-clés : intellectual disability  language impairment  measurement invariance  quality of life Index. décimale : PER Périodiques Résumé : To address the dearth of literature on outcomes for autistic individuals with significant intellectual disability, researchers require validated measures to use in research. This study examined the psychometric properties of PROMIS quality-of-life caregiver-proxy scales included in the PROMIS Autism Battery–Lifespan among autistic children who are minimally verbal and with intellectual disability (MVID). We examined basic psychometric properties of the PROMIS caregiver-proxy scales and tested the scales for measurement invariance between groups of autistic children who are minimally verbal with intellectual disability and those without signficant intellectuatl disability (N = 448). We also descriptively examined feedback from caregivers regarding the appropriateness of the questions to capture meaningful outcomes for their autistic children who are minimally verbal with intellectual disability. Results indicated that some PROMIS caregiver-proxy scales (Anger, Positive Affect, and Life Satisfaction) exhibited strong psychometric evidence and content validity, but many other scales either did not demonstrate measurement invariance between groups or included a high proportion of items endorsed by caregivers as not applicable for their minimally verbal autistic child. Our findings emphasize the need for continued work developing appropriate measures for capturing meaningful outcomes among minimally verbal autistic people with significant intellectual disability.Plain Language SummaryResearchers need reliable tools to study outcomes for autistic individuals with significant intellectual disability. This study looked at the PROMIS caregiver-proxy scales from the PROMIS Autism Battery–Lifespan for minimally verbal autistic children with intellectual disability. These scales were made to capture aspects of quality of life important for people on the autism spectrum. We compared responses from parents of autistic children with and without significant cognitive and language issues and checked if the questions were suitable for children with high support needs. Results showed that some scales (Anger, Positive Affect, and Life Satisfaction) worked well, but others did not work as well for this group. Our study highlights the need to develop better tools to measure meaningful outcomes for autistic people with the highest support needs. En ligne : https://dx.doi.org/10.1177/13623613251394995 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=579

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