Understanding and measuring caregiver-reported quality of life among minimally verbal autistic children with intellectual disability.
PROMIS caregiver-proxy QoL scales need a trim before you use them with minimally verbal autistic kids who have ID.
01Research in Context
What this study did
The team asked caregivers of minimally verbal autistic children with ID to fill out PROMIS quality-of-life forms.
They checked which questions made sense and which ones did not apply to these kids.
What they found
Some PROMIS scales worked well, but many items missed the mark.
Caregivers left lots of questions blank because the words did not fit their child’s life.
How this fits with other research
Delgado-Lobete et al. (2020) built the free PAB-L tool that covers the whole lifespan and adds self-report. Their work extends this study by fixing the same item bank for wider use.
Ding et al. (2017) saw that high-functioning autistic kids rate their own QoL higher than parents do. The new data show the opposite problem: when kids can’t speak, the parent form still needs better items.
Liu et al. (2025) shrank PROMIS down to just three questions for any autistic child. That ultra-short form avoids the misfit items spotted here, so the two papers together point to a shorter, cleaner scale.
Why it matters
Before you use PROMIS caregiver-proxy forms, flip through the items. If questions assume talking, reading, or solo play, skip them or pick a different tool. Try the free PAB-L or the new 3-item QOLASD-C3 to save time and still get valid scores.
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02At a glance
03Original abstract
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.
Autism : the international journal of research and practice, 2026 · doi:10.1177/13623613251394995