(Reuters Health) – U.S. government information on cases and deaths at nursing homes lacks data from early in the pandemic, resulting in a large undercount for 2020, a new study suggests.
A comparison of federal numbers to those tallied by individual states finds that the U.S. government missed a mean of 43.7% of COVID-19 cases and 40% of deaths in nursing homes before May 24, 2020 when federal reporting was first required, according to the results published in JAMA Network Open.
“Because of the delay in federal reporting, roughly 68,000 cases and 16,000 deaths in nursing homes were missed,” said the study’s lead author, Karen Shen, an economist who was a PhD student at Harvard University, in Cambridge, Massachusetts, at the time the analysis was performed.
“One of our goals was purely to document how big those numbers were and make sure they were right,” Shen said. “It’s pretty widely known now that the federal number under-reports cases and deaths.”
Another goal was to provide other researchers with more accurate figures, Shen said.
“One thing we’re really stressing is that this delay in the start of federal reporting went on way too long, missed a massive period and caused a lot of confusion,” Shen said. Next time there is another health crisis, “we’d like to see quicker action on data collection and higher data quality standards.”
To take a look at how many cases and deaths the federal government figures might be missing, Shen and her colleagues turned to data sources including the National Healthcare Safety Network (NHSN) COVID-19 Nursing Home Data set, state health department data, Center for Medicare and Medicaid Services Nursing Home Compare and Provider Services file, Brown University’s Long-Term Care: Facts on Care in the United States, and the New York Times COVID-19 Database.
To supplement the NHSN data, the researchers collected facility-level data from 20 state health departments that required reporting of COVID-19 cases or deaths dating back to the beginning of the pandemic. Shen and her colleagues collected cumulative resident case data from 12 states and cumulative death data from 19 states as of the week May 21-May 29, 2020 to compare with numbers the states provided in their first required submission to NHSN on May 24, 2020, which should have included new cases and deaths for the week and cumulative numbers to that point.
Among the 15,415 nursing homes examined by the researchers, which included 4,599 with state case data and 7,405 with state death data, a mean of 43.7% of COVID-19 cases and 40% of COVID-19 deaths prior to May 24 were not reported in the first NHSN submission in sample states.
Extrapolating from the sampled states, and assuming that data submitted to NHSN after May 24 was accurate, that suggested a total of 68,613 cases and 16,623 deaths were omitted nationwide at the end of May 2020.
Examining NHSN data through the final submission of the year, the researchers estimate the year-end total nursing home case count was 592,629, and the death count was 118,335. Of these, unreported cases and deaths represent 11.6% of COVID-19 cases and 14.0% of COVID-19 deaths in nursing home residents in 2020.
“They are finding an undercounting of deaths and cases of COVID-19 in long-term care facilities, largely because the government was not requiring reporting,” said Dr. John Rowe, a professor of health policy and aging at Columbia University’s Mailman School of Public Health in New York City, who wasn’t involved in the research. “The catastrophe of being a resident in a long-term care facility with multiple impairments was almost a death sentence. The finding that there were 14% more just underlines that fact.”
“This shows the importance of having valid data so we can track the pace of the pandemic and understand where we are making progress and where we are not,” Dr. Rowe said. “It’s also interesting that when they did this there was no relationship between reporting to ownership of long-term care facilities.”
The new study “highlights the fact that prior to the end of May 2020, COVID-19 cases and deaths are really a black box,” said Dr. Morgan Katz, an assistant professor of infectious diseases at Johns Hopkins Medicine in Baltimore, who wasn’t involved in the study. “There are no reliable data from this time period. And it’s not just the lack of requirements to report, but also in many nursing homes they were not doing universal testing.”
Still, Dr. Katz said, “I agree with their numbers. They’re getting closer. But at this point it’s going to be difficult to get truly accurate numbers.”
SOURCE: https://bit.ly/3yVsbVf and https://bit.ly/3E4PUGs JAMA Network Open, online September 9, 2021.