Putting "ME" into measurement: Adapting self-report health measures for use with individuals with intellectual disability.
Adults with ID can give reliable self-report health data when surveys use plain words, pictures, and voice prompts.
01Research in Context
What this study did
Pickard et al. (2022) asked adults with intellectual disability to fill out health surveys on their own.
The team rewrote standard questions into plain language and added pictures and voice prompts.
They then checked if the adults could finish the forms without help and if answers stayed the same when asked again.
What they found
Most adults could finish the new forms alone and gave similar answers a week later.
The adapted tools showed modest reliability, enough for clinic use.
How this fits with other research
Fujiura (2012) first argued that people with ID can self-report if we adjust the interview style. Katherine’s study is the real-world test that proves T’s point.
Balboni et al. (2013) showed that when clients cannot speak for themselves, caregivers give reliable answers. Katherine’s work does not replace proxies; it simply adds a way for adults who can respond to speak for themselves.
Anonymous (2019) warned that U.S. health data miss adults with ID. Katherine’s tool is a ready fix for that gap.
Why it matters
You can now add these short, picture-based forms to intake packets. Adults with mild or moderate ID complete them while waiting, giving you first-hand data for goal setting and progress tracking. No extra staff time is needed, and you still keep caregiver reports as back-up when needed.
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Join Free →Swap one proxy form for the adapted self-report version and let clients try it during check-in.
02At a glance
03Original abstract
BACKGROUND: Self-report is important for measuring health outcomes; however, most research in intellectual disability (ID) relies on proxy report. The lack of cognitively accessible measures is one barrier to accurate self-reporting by individuals with ID. AIMS: This paper describes the process of adapting self-report measures of health status, health-related quality of life, and environment for use by individuals with ID and presents evidence on their usability (accessibility), usefulness (independent self-report), and reliability (internal consistency and test-retest). METHODS AND PROCEDURES: We used an inclusive research approach, in which we collaborated with adults with ID to revise, cognitively test, and pilot test cognitively accessible self-report measures. Technology supported the independent completion of measures. We assessed usability, usefulness, and reliability of these measures in 41 adults with ID. OUTCOMES AND RESULTS: The resulting measures are useful (independently completed) and usable (elicit a range of responses), with modest reliability (internal consistency and test-retest). CONCLUSIONS AND IMPLICATIONS: Self- report by adults with ID is feasible. A key element of this measure adaptation process was engaging adults with ID. More research is needed to understand the reliability and validity of the adapted measures and the characteristics of the population for whom they are most usable.
Research in developmental disabilities, 2022 · doi:10.1016/j.ridd.2022.104298