Study from Syracuse University shows higher death rates from COVID-19 for people with IDD; calls for more accurate reporting in cause of deaths

Potential Impacts of COVID-19 on Individuals with Intellectual and Developmental Disability: A Call for Accurate Cause of Death Reporting
Dalton Stevens & Scott D. Landes

Research Brief, Issue Number 20, April 14, 2020
 
From the Lerner Center for Public Health Promotion at Syracuse University

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KEY FINDINGS
• COVID-19 deaths will likely be more prevalent among those with intellectual and developmental disability (IDD).
• Death rates from pneumonia are between 2.2 times and 5.8 times higher among individuals with an IDD than among those without IDD, giving us a clear warning of the severity of COVID-19 among people with IDD.
• Underestimation of COVID-19 deaths is potentially more severe for those with IDD.
• Cause of death certifiers must be attentive to accurately recording IDD on the death certificate.
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In this recent study from Syracuse University, researchers report that people with Intellectual and Developmental Disabilities (IDD) in New York State who have confirmed cases of COVID-19, have a death rate of 9.5% compared to a death rate of 4.4% for the general population:

“…Out of 140,000 people with IDD who receive formal disability services in New York State, 1,100 have confirmed Covid—19 and 105 have died.”

“…Given that the population of adults with IDD is more likely to die from pneumonia than the general population, and the development of pneumonia is a characteristic of severe COVID-19 cases, the higher case fatality rate is not surprising. However, it is uncertain how much this disparity will increase as deaths continue to accumulate. “

An analysis of the death rate from pneumonia in 2017, before COVID-19 was present in the population, shows the pneumonia death rate in people without IDD was 1.8%. For people with IDD, the death rate ranged from 3.9 to 10.2% depending on the diagnosis, with Down syndrome having the highest rate.

Why are the fatality rates for COVID-19 higher in people with IDD?

“It is not yet possible to determine the exact causal mechanism behind the higher COVID-19 case fatality rates we are now seeing among the population with IDD. The CDC suggests that people with some specific impairments (mobility, communication, cognition) are more vulnerable to COVID-19. Some disability-advocates and parents of children with IDD suggest that the higher case fatality rates may be, at least partially, due to the slow pace at which the disability service structure has responded to the pandemic.” …”for individuals with IDD to survive this pandemic, as well as any potential future outbreaks, it will be necessary to ensure that the IDD service system is better prepared to adjust rapidly to the challenges of providing care in the midst of severe health crises.”

A complication in accurately assessing death rates for people with IDD from COVID-19 is that the cause of death is often attributed to the disability rather than the virus:

“On close to half (48%) of the death certificates of people with IDD, certifiers inaccurately identify the individual’s disability as their underlying cause of death.3 If this practice continues during the COVID-19 pandemic, we will likely never be able to determine the actual COVID-19 death rate for individuals with IDD. Given low rates of testing and misclassifications of COVID-19 death early on, mortality rates from COVID-19 will be underestimated for the entire population, and underestimation is likely to be more severe among individuals with IDD.”

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See the Research Brief for details and references that appear within the report.
 
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