Psychometric properties of a brief self-reported health-related quality of life measure (HRQoL-IDD) for persons with intellectual and developmental disabilities.
Marjorie A Pett, Jia-Wen Guo, Beth Cardell and 3 others
PMID 33522020WHAT IT FOUND
A new 16-item self-report measure captures health-related quality of life for adults with intellectual and developmental disabilities.
It is readable at a second-grade level and most participants completed it independently. The tool assesses social, emotional, and functional well-being alongside healthy decision-making.
Key findings
01The 16-item measure is highly readable, with a Flesch-Kincaid score of 93 out of 100, appropriate for readers at a 2nd grade level.
02Most participants completed the measure without assistance, and those who needed help primarily required someone to read the items to them.
03The measure demonstrates acceptable internal consistency reliability, with Omega coefficients ranging from 0.73 to 0.83 across subscales.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study used a convenience sample from community settings, which may not represent all adults with intellectual and developmental disabilities. Formal cognitive or adaptive assessments were not administered; eligibility relied on provider judgment. Response stability was assessed only within the same session, not over a longer period. Participants with more severe support needs or those who could not pass the acquiescence screening were excluded. High scores on the measure suggest a potential ceiling effect, where the tool may not distinguish between moderate and high well-being.
Declared interests
The authors declare that the measure is available at no cost via a website. No specific funding sources or conflicts of interest are detailed in the provided text beyond the institutional context.
The easy way to misread this
Do not assume this measure is validated for long-term tracking or for individuals with severe intellectual disabilities. The study only assessed stability within a single session and excluded participants who could not pass basic screening questions.