Measures of aging with disability in U.S. secondary data sets: Results of a scoping review

There remain significant knowledge gaps in our understanding of aging with long-term disability. It is possible that important advances in knowledge could be gained using existing secondary data sets. However, little is known regarding which of the data sets available to researchers contain the age-related measures needed for this purpose, specifically age of onset and/or duration of disability measures.

To better understand the capacity to investigate aging with long-term disability (e.g. mobility limitation) and aging with long-term chronic conditions (e.g. spinal cord injury, multiple sclerosis) using extant data.

Public use national and regional data sets were identified through existing reports, web-based searches, and expert nomination. The age- and disability-related variables, including age of onset and duration of disability, were tabulated for data sets meeting inclusion criteria. Analysis was descriptive.

A total of N = 44 data sets were reviewed. Of these, 22 contained both age and disability variables. Within these 22 data sets, 9 contained an age of onset or duration of disability variable. Six of the nine data sets contained age of diagnosis for a single or set of health conditions. Onset of functional limitation is in two, and onset of self-reported and/or employment disability is in four, of the nine data sets respectively.

There is some, but limited opportunity to investigate aging with long-term disability in extant U.S. public use secondary data sets.