Death by mental retardation? The influence of ambiguity on death certificate coding error for adults with intellectual disability.
One in five death certificates mislabels ID as the final cause when records are thin or death happens outside hospital walls.
01Research in Context
What this study did
The team looked at 2004 US death certificates that listed "mental retardation."
They asked: how often is ID coded as the underlying cause of death when it is not?
They also checked which clues made the error more likely.
What they found
One in every five certificates wrongly picked ID as the final cause.
The error showed up most when the person had few other health notes, died outside the hospital, or had injury codes.
How this fits with other research
Matson et al. (1999) already warned that the ICD-10 ID guide is full of holes. The new numbers prove those holes hurt real records.
Tassé et al. (2013) found that half of older adults with ID have drug errors. Together the two papers show that sloppy paperwork follows adults with ID in life and in death.
Friedman (2016) shows the words "mental retardation" stuck around in Medicaid forms long after Rosa’s Law. Prigge et al. (2013) show the same stale label living on death certificates, so the language lag is wider than just waiver paperwork.
Why it matters
Wrong cause-of-death data hides medical risks for future patients and skews public-health dollars. When you serve adults with ID, add full health histories and current meds to every file. Push your state vital-records office to drop the outdated label and require clearer comorbid codes. Better paperwork today keeps tomorrow’s data—and funding—accurate.
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02At a glance
03Original abstract
BACKGROUND: Although the coding of mental retardation as underlying cause of death has been recognised by previous researchers as erroneous, factors influencing this inaccuracy have not been sufficiently analysed. This study explores the effects of diagnostic ambiguity on risk of mental retardation being coded as underlying cause of death on US death certificates from 2004. METHODS: Utilising all US death certificates from 2004 that included a cause of death code for mental retardation, logistic regression analysis provided estimates of the likelihood of having mental retardation erroneously coded as the underlying cause of death. Estimators used to measure ambiguity included the number of multiple causes of death, the place of death, and ICD-10 diagnostic Chapter codes. RESULTS: A total of 2278 US death certificates from 2004 included a cause of death code for mental retardation. Of these death certificates, 20% erroneously coded mental retardation as the underlying cause of death. Reflecting the negative impact of diagnostic ambiguity on death certificate coding accuracy, mental retardation was more likely to be coded as underlying cause of death for decedents who: (1) had a death certificate that provided less information on co-morbid disease processes; (2) died in an outpatient or emergency room setting; or (3) had either abnormal symptomatology or death by injury, accident or other external cause. CONCLUSIONS: Findings from this study, as well as prior research, demonstrate that attempts to understand mortality trends for this population must attend to frequent underlying cause of death coding errors which threaten accuracy of cause of death data. Furthermore, inquiry is warranted into the impetus behind US death certificate coding policy that continues to allow the erroneous coding of 'death by mental retardation'.
Journal of intellectual disability research : JIDR, 2013 · doi:10.1111/j.1365-2788.2012.01614.x