Comparing self-report medication data from a longitudinal study on intellectual disability and national dispensing records.
Older adults with intellectual disability can accurately report their own psychotropic meds, so self-report is a valid research tool.
01Research in Context
What this study did
The team asked older adults with intellectual disability to name every psychotropic drug they take.
They then checked each answer against the country’s official pharmacy-dispensing file.
The goal was to see if self-report alone is good enough for research.
What they found
Agreement ranged from substantial to almost perfect across drug classes.
Self-report matched the pharmacy file well enough that large studies can skip blood or urine checks.
How this fits with other research
Emerson et al. (2013) warned that self-report from people with ID is often shaky. The new data say the warning is too broad: for medicines, older adults with ID can give reliable answers.
Bassett-Gunter et al. (2017) found that self- plus staff reports catch substance use as well as lab tests. Jackson et al. (2025) now show that, for prescribed psychotropics, you may not even need the staff report.
Cerutti et al. (2004) used only pharmacy files to track psychoactive trends. The new study keeps those records as the gold standard but proves you can collect the same data faster by simply asking clients.
Why it matters
If you run medication-reduction programs or side-effect checks, start by asking the client. Their list will usually match the pharmacy file, saving you time and invasive tests. When numbers don’t line up, you have an instant red flag for adherence issues or undocumented changes.
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02At a glance
03Original abstract
BACKGROUND: Medication data are a valuable resource in epidemiological studies. As the most common data collection method of medication data is self-report, it is important to understand the accuracy of this in comparison with other methods such as dispensing records. The aim of this study was to compare the agreement between two different sources of medication data of older adults with intellectual disability (ID). METHODS: Self-report medication data were gathered from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing and linked to national pharmacy dispensing records. The kappa statistic was used to measure agreement between the two data sources for psychotropic medication. RESULTS: The lowest agreement level was 'moderate' for the number of anxiolytics reported (kappa 0.56). The highest level of agreement was 'almost perfect' for the binary variable of antipsychotics (kappa 0.91). Other agreement results were 'substantial' or 'almost perfect'. CONCLUSIONS: Good agreement was found between the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing medication dataset and national dispensing records. Self-report medication data appear to be a valid method of data collection in psychotropic medication use in adults with ID.
Journal of intellectual disability research : JIDR, 2025 · doi:10.1111/jir.13192