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NIH-supported studies, including one from UNC School of Medicine’s Emily Pfaff, PhD, co-first author of the study, Coding long COVID: characterizing a new disease through an ICD-10 lens, show variations in long COVID symptoms and diagnostic experiences among different racial and ethnic groups.


New evidence to better understand the complex symptoms of long COVID recently suggests there may be important differences in how long COVID manifests in different racial and ethnic groups. NIH-supported studies, including one from UNC School of Medicine’s Emily Pfaff, PhD, co-first author of the study, Coding long COVID: characterizing a new disease through an ICD-10 lens, show these variations in symptoms and diagnostic experiences. Pfaff’s study, published in the BMC Medicine journal, shows how researchers analyzed data from the electronic health records of 33,782 adults and children who received a diagnosis for long COVID between October 2021 and May 2022 at one of 34 U.S. medical centers. Findings showed striking multiple patterns including most of the patients being white, female, non-Hispanic, and likely to live in areas with low poverty and greater access to health care.

However, another analysis published in the Journal of General Internal Medicine looked at the health records of 62,339 adults who received a positive COVID-19 test at one of five academic health centers in New York City, all between March 2020 and October 2021. Researchers tracked the patients’ health for one to six months after the positive test and compared the findings to 247,881 adults who never had COVID. Among 13,106 adults who had severe COVID that required hospital care, the researchers found Black and Hispanic adults were disproportionately represented. Of those who had these severe cases, for example, 1 in 4 were Black adults, 1 in 4 were Hispanic adults, and 1 in 7 were white adults.

In the months following infection, Black adults with severe disease were more likely than white adults to be diagnosed with diabetes and experience headaches, chest pain and joint pain, but less likely to have sleep disorders, cognitive problems, or fatigue. Similarly, Hispanic adults who required hospital care were more likely than white adults to have headaches, shortness of breath, joint paint, and chest pain, but less likely to have sleep disorders, cognitive problems, or fatigue.

Given what researchers already knew about the disproportionate impact of COVID on people of color and economically disadvantaged populations, the findings from both studies are standing out. Pfaff, assistant professor in the Division of Endocrinology and Metabolism at the UNC School of Medicine, said the pattern suggested that not all patients who have long COVID are being diagnosed.

“You can see all the different ways these diagnostic codes can provide insight, but they can also skew the whole story,” Pfaff said.

You can read more about the findings here.