Differences in diagnostic coding in long COVID: sociodemographic and symptom interference factors

BMC Infect Dis. 2026 Jul 7. doi: 10.1186/s12879-026-13943-x. Online ahead of print.

ABSTRACT

PURPOSE: We aimed to test associations of participant-reported Long COVID symptom interference with life activities with Long COVID symptoms, presence of U09.9 Long COVID diagnosis code, demographics, and clinical factors. In a subgroup, we documented coding related to Long COVID and post-exertional malaise in the electronic medical record (EMR).

METHODS: Using a cross-sectional analysis (n = 205) of participant data from a Long COVID survey, we tested associations with Chi-square, Fisher’s exact, or Fisher-Freeman-Halton exact statistical tests and Independent Samples T-tests.

RESULTS: Participants were predominately female (67%) with a mean age of 50.9 years. Participants were White (50.0%), African American (47.5%), and Asian (2.5%); 1.5% reported Hispanic ethnicity. 41% of participants reported high Long COVID symptom interference with life activities. Participants who were older (p=.028), were female (p=.002), were obese (p=.049), had worse general health (p<.001), worse physical health (p<.001), had worse mental health (p<.001), and had U09.9 diagnosis (p<.001) were more likely to experience high symptom interference. Among participants with high symptom interference, there were no significant associations with U09.9 diagnosis code. EMR sub-analysis (n = 100) revealed that among participants that reported high symptom interference (n = 39), 64% (n = 25) had a code related to Long COVID.

CONCLUSION: Although we found discrepancies between self-reported measures and EMR coding, we did not find evidence of demographic biases in diagnosis among participants with high symptom interference.

CLINICAL TRIAL NUMBER: Not applicable.

PMID:42414935 | DOI:10.1186/s12879-026-13943-x