Patient-reported outcome measures for young people with developmental disabilities: incorporation of design features to reduce cognitive demands.
Ariel E Schwartz, Jessica M Kramer, Angela L Longo
PMID 29171008WHAT IT FOUND
The six self-report measures for young people with developmental disabilities varied in design features that reduce cognitive demands.
Many had complex wording, unclear visuals, or few supports, so scores from them may not be fully trustworthy.
Key findings
01Only six patient-reported outcome measures met the inclusion criteria for self-care and domestic life tasks used by young people with disabilities.
02Visuals and examples often did not match the intended item meaning.
03No measure included explicit instructions to encourage respondents or let them complete the measure at their own pace.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The paper evaluated measures, not patients, so it does not show how young people actually responded to the items. The search may have missed newer measures. The authors could not determine how well each measure had been validated in young people with developmental disabilities because that information was often not reported. The cognitive demand coding approach was novel and was not tested for reliability or validity. The findings apply to six measures for self-care and domestic life tasks, not to all patient-reported outcome measures.
Declared interests
The authors reported no conflicts of interest.
The easy way to misread this
Do not read this as proof that these measures give wrong scores. It only showed design features that may increase cognitive demands, and the authors did not test whether young people interpret the items incorrectly.