Characterization of Post-COVID-19 Definitions and Clinical Coding Practices: Longitudinal Study

Abstract

Background: Post-COVID-19 condition (colloquially known as "long COVID-19") characterized as postacute sequelae of SARS-CoV-2 has no universal clinical case definition. Recent efforts have focused on understanding long COVID-19 symptoms, and electronic health record (EHR) data provide a unique resource for understanding this condition. The introduction of the International Classification of Diseases, Tenth Revision (ICD-10) code U09.9 for "Post COVID-19 condition, unspecified" to identify patients with long COVID-19 has provided a method of evaluating this condition in EHRs; however, the accuracy of this code is unclear.

Objective: This study aimed to characterize the utility and accuracy of the U09.9 code across 3 health care systems-the Veterans Health Administration, the Beth Israel Deaconess Medical Center, and the University of Pittsburgh Medical Center-against patients identified with long COVID-19 via a chart review by operationalizing the World Health Organization (WHO) and Centers for Disease Control and Prevention (CDC) definitions.

Methods: Patients who were COVID-19 positive with either a U07.1 ICD-10 code or positive polymerase chain reaction test within these health care systems were identified for chart review. Among this cohort, we sampled patients based on two approaches: (1) with a U09.9 code and (2) without a U09.9 code but with a new onset long COVID-19-related ICD-10 code, which allows us to assess the sensitivity of the U09.9 code. To operationalize the long COVID-19 definition based on health agency guidelines, symptoms were grouped into a "core" cluster of 11 commonly reported symptoms among patients with long COVID-19 and an extended cluster that captured all other symptoms by disease domain. Patients having ≥2 symptoms persisting for ≥60 days that were new onset after their COVID-19 infection, with ≥1 symptom in the core cluster, were labeled as having long COVID-19 per chart review. The code's performance was compared across 3 health care systems and across different time periods of the pandemic.

Results: Overall, 900 patient charts were reviewed across 3 health care systems. The prevalence of long COVID-19 among the cohort with the U09.9 ICD-10 code based on the operationalized WHO definition was between 23.2% and 62.4% across these health care systems. We also evaluated a less stringent version of the WHO definition and the CDC definition and observed an increase in the prevalence of long COVID-19 at all 3 health care systems.

Conclusions: This is one of the first studies to evaluate the U09.9 code against a clinical case definition for long COVID-19, as well as the first to apply this definition to EHR data using a chart review approach on a nationwide cohort across multiple health care systems. This chart review approach can be implemented at other EHR systems to further evaluate the utility and performance of the U09.9 code.

Keywords: COVID-19; International Classification of Diseases; PASC; U09.9 ICD-10 code; algorithm validation; chart review; electronic health records; long COVID-19; postacute sequelae of SARS-CoV-2; veterans.

Figure 1

Patient sampling strategy for chart review. BIDMC: Beth Israel Deaconess Medical Center; EHR: electronic health record; ICD-10: International Classification of Diseases, Tenth Revision; PASC: postacute sequelae SARS-CoV-2; PCR: polymerase chain reaction; UPMC: University of Pittsburg Medical Center; VHA: Veterans Health Administration.

Figure 2

Chart review approach. CDC: Centers for Disease Control; WHO: World Health Organization.

Figure 3

Frequency of a new U09.9 ICD-10 code assignment per 10,000 new COVID-19 cases in the last 12 months, not including the month of U09.9 diagnosis. HS: health care system; ICD-10: International Classification of Diseases, Tenth Revision.

Figure 4

Prevalence of the U09.9 ICD-10 code by region. ICD-10: International Classification of Diseases, Tenth Revision; VA: Veterans Affairs; VISN: Veterans Integrated Service Networks.

Figure 5

Comparison of results among all sites. (A) Predictive values of ICD-10 U09.9 code for various clinical definitions of long COVID-19. (B) Capture of PASC symptoms using diagnosis codes and natural language processing data. (C) Average number of new onset PASC symptoms in long COVID-19 clinic patients. CDC: Centers for Disease Control; HS: health care system; ICD-10: International Classification of Diseases, Tenth Revision; PASC: postacute sequelae of SARS-CoV-2; SOB: shortness of breath; WHO: World Health Organization.