# Erroneous Coding of Developmental Disabilities as Underlying Cause of Death

> **NIH NIH R03** · SYRACUSE UNIVERSITY · 2020 · $65,610

## Abstract

PROJECT SUMMARY
Adults with developmental disabilities die at ages approximately 20 years younger than peers in the general U.S.
population. This striking mortality disadvantage is larger than the mortality gap between men and women, Whites
and Blacks, and adults in the top and bottom income quartiles. The reasons for the disparity are poorly
understood despite decades of research on the topic. However, new research shows that a rampant practice of
erroneously coding death certificates for adults with developmental disability results in widespread
misclassification of their underlying causes of death. Furthermore, these erroneous codes obscure alarmingly
high rates of death due to choking and Alzheimer’s disease and related dementias. While uncovering the
obscuring effect of erroneous coding was a crucial advance in research, ongoing efforts to eliminate this
misguided practice require empirical evidence on the multilevel factors that determine erroneous coding. The
proposed project will systematically assess whether erroneous coding disproportionately occurs (1) among
certain sociodemographic subgroups of decedents, (2) when certain comorbid diseases or injuries are present
at the time of death, and (3) across certain U.S. state contexts. By identifying which subgroups are at greatest
risk of misclassification, results will inform strategies to prevent misclassification and, thereby, determine robust
estimates of cause-specific mortality among these adults. The study’s central hypothesis is that erroneous codes
are more commonly found among decedents from marginalized social groups, in situations when the true cause
of death was highly preventable (e.g., choking), and within U.S. states where fiscal and legal policies are less
amenable to the needs of individuals with developmental disability. Using data from the National Vital Statistics
System 2012–2016 U.S. Multiple Cause-of-Death Mortality files merged with state-level information on financial
commitments to developmental disability services and laws governing the certification of death certificates, this
project will address three Specific Aims: (1) Examine the extent to which decedents’ sociodemographic
characteristics predict the likelihood of having developmental disability erroneously coded as the underlying
cause of death; (2) Assess whether the presence of comorbid diseases and injuries present at the time of death,
with an emphasis on choking incidents, predicts the likelihood that a developmental disability is erroneously
coded as underlying cause of death; and (3) Determine whether variation in funding for developmental disability
services among states, and in state laws regarding who can certify a death certificate, predict whether
developmental disability is erroneously coded as underlying cause of death. Results will provide a multilevel
understanding of how individual-level sociodemographic characteristics, individual-level comorbid diseases and
injuries, and state-level polici...

## Key facts

- **NIH application ID:** 9873163
- **Project number:** 1R03AG065638-01
- **Recipient organization:** SYRACUSE UNIVERSITY
- **Principal Investigator:** Scott D Landes
- **Activity code:** R03 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $65,610
- **Award type:** 1
- **Project period:** 2020-01-01 → 2021-11-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9873163

## Citation

> US National Institutes of Health, RePORTER application 9873163, Erroneous Coding of Developmental Disabilities as Underlying Cause of Death (1R03AG065638-01). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9873163. Licensed CC0.

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