Evaluating representativeness and cancer screening outcomes in a state department of developmental services database.
State IDD files give usable cancer-screening numbers, but adults in 24-hour care are over-counted—weight your analyses or recruit harder for those living independently.
01Research in Context
What this study did
Cantwell et al. (2014) checked if a state disability database can tell us who really got cancer tests.
They compared the state records with medical charts of adults with intellectual or developmental disabilities.
The goal was to see if planners can trust the files when they study screening rates.
What they found
The database was fairly good at flagging who had a mammogram, Pap test, or colon check.
It missed some people, but not enough to wreck big-picture numbers.
One catch: people who live in group homes were counted far more than people who live on their own.
How this fits with other research
Robertson et al. (2013) set the stage one year earlier. They showed that asking for at least two doctor visits finds the true IDD group better than looser rules.
Joanne used that tighter rule, so the cancer-screening counts rest on a cleaner list of clients.
Bonardi et al. (2019) later looked at many states and warned that every registry has different gaps. Their review folds in Joanne’s warning: group-home adults are easier to track, so they look over-served while the independent adults look under-served.
Elmadani et al. (2024) summed up education trials and found none that actually checked if people went for screening after class. Joanne’s work shows why that next step is possible: the state file can confirm real visits, not just quiz answers.
Why it matters
If you write grants, pick comparison groups, or set agency benchmarks, peek at who is missing. Add outreach to clients in scattered-site apartments or family homes so rates reflect everyone, not just the easiest to count.
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02At a glance
03Original abstract
Though it is widely recognized that people with intellectual and developmental disabilities (IDD) face significant health disparities, the comprehensive data sets needed for population-level health surveillance of people with IDD are lacking. This paucity of data makes it difficult to track and accurately describe health differences, improvements, and changes in access. Many states maintain administrative health databases that, to date, have not been widely used for research purposes. In order to evaluate the feasibility of using administrative databases for research purposes, the authors attempted to validate Massachusetts' administrative health database by comparing it to a large safety net hospital system's patient data regarding cancer screening, and to the state's service enrollment tables. The authors found variable representativeness overall; the sub-population of adults who live in 24-hr supported residences were better represented than adults who live independently or with family members. They also found a fairly low false negative rate for cancer screening data as compared with the "gold standard" of hospital records. Despite some limitations, these results suggest that state-level administrative databases may represent an exciting new avenue for health research. These results should lend context to efforts to study cancer and health screening variables using administrative databases. The present study methods may also have utility to researchers in other states for critically evaluating other state IDD service databases. This type of evaluation can assist researchers in contextualizing their data, and in tailoring their research questions to the abilities and limitations of this kind of database.
Intellectual and developmental disabilities, 2014 · doi:10.1352/1934-9556-52.2.136