Piloting the use of global health measures in a Down syndrome clinic.

It was a small pilot at one Down syndrome clinic, so it may not represent all people with Down syndrome. It did not collect standardized cognitive test scores, so the study could not tell whether results varied by intellectual disability severity. Only English-speaking families were eligible, and many returned surveys were anonymous, so demographic and language factors could not be fully analysed. The PROMIS global health measures were not previously validated in Down syndrome or intellectual disability in this study; the paper used them as-is and compared them with general population norms. Paper forms allowed blanks, and 16 returned surveys were excluded for incomplete or marked answers. Survey completion was not observed, so some self-report forms may have been completed by caregivers, although paired scores were not identical. The study was not powered for small subgroups such as parents of children age 5 to 6 or children age 7 to 17.

Do not treat these PROMIS global health scores as a validated measure of health in Down syndrome. This was a small single-clinic pilot without external health outcome checks, and adults' self-reports differed from parent reports, so the scores should not be used to make clinical decisions as if they were established outcomes.