Variation in identifying children and adolescents with disability and developmental disability in population-based public health surveys.
Lauren A Russell, Sarah C Tinker, Catherine E Rice and 2 others
PMID 38001004WHAT IT FOUND
Estimated prevalence of developmental disability in U.S. children varies widely depending on the definition used.
Diagnosis-based definitions yield higher prevalence than functional limitation definitions, meaning the choice of survey questions significantly alters who is counted as having a disability.
Key findings
01Prevalence estimates for developmental disability varied substantially across different definitions, with the lowest estimates from the DD Act and the highest from the HHS surveillance definition.
02Functional disability definitions (WG-SS and ACS-6) identified lower proportions of younger children compared to diagnosis-based definitions (HHS and DSM-5).
03There was significant variation in prevalence estimates between the two national surveys (NHIS and NSCH) for the same definitions, likely due to differences in available survey questions.
STILL TO COME
How it was doneWhat they found
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What it does not show
The study used a targeted review of definitions rather than a systematic review. Many components of the selected definitions were not available in the surveys, requiring approximations. Data relied on parent or caregiver reports, which may not accurately reflect the child's functional experience. The analysis was limited to two national surveys (NHIS and NSCH) because other sources lacked sufficient data. The DD Act definition could only be partially operationalized, with few survey variables matching its specific components.
Declared interests
No conflicts of interest or funding sources are explicitly declared in the provided text.
The easy way to misread this
Do not assume that a child who does not meet a functional disability definition (like WG-SS) lacks a developmental disability, or vice versa. The study shows these definitions capture different populations; a diagnosis-based definition may identify a child with a specific condition who does not yet show broad functional limitations, while a functional definition may identify limitations without a specific diagnosis.