Factors associated with the reporting of Down syndrome as the underlying cause of death on US death certificates.
S D Landes, M A Turk, J M Finan
PMID 35191108WHAT IT FOUND
Death certificates for adults with Down syndrome frequently list the disability as the cause of death, hiding the actual medical cause.
This error is more common when deaths occur outside hospitals or when few other conditions are listed, obscuring preventable causes like pneumonia.
Key findings
01Down syndrome was reported as the underlying cause of death in 52% of cases, with 3.3% listing it exclusively without any other conditions.
02Exclusive reporting of Down syndrome as the cause of death was significantly more likely for deaths occurring at home, in nursing homes, or in other non-hospital settings compared to hospital inpatient deaths.
03After excluding cases involving Alzheimer's disease or unspecified dementia, inaccurate reporting was more likely when influenza or pneumonia was present, and less likely when a malignant neoplasm was listed.
STILL TO COME
How it was doneWhat they found
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What it does not show
The study is limited to US data and cannot be generalized to other countries due to differences in death certification processes. Errors and omissions are common in death certificates generally, so some decedents with Down syndrome may have had the disability omitted entirely, meaning results only reflect determinants among those where it was reported. Missing data for autopsy status and certifier were retained in the analysis, which may influence the interpretation of uncertainty factors. The study identifies associations but cannot definitively prove that racial bias caused the reporting errors, only that there is a statistical link.
Declared interests
The study was supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) and the Administration for Community Living (ACL).
The easy way to misread this
Do not assume that reporting Down syndrome as the cause of death is always an error. The CDC specifically instructs that it should be listed as the underlying cause of death when the decedent had a diagnosis of Alzheimer's disease or unspecified dementia, which was a major factor in the overall statistics before these cases were separated in the analysis.