Characterizing the use of the ICD-10 Code for Long COVID in 3 US Healthcare Systems

Zhang, Harrison G.; Maripuri, Monika; Samayamuthu, Malarkodi Jebathilagam; Beaulieu‐Jones, Brendin R.; Baig, Huma S; L’Yi, Sehi; Ho, Yuk‐Lam; Morris, Michele; Panickan, Vidul Ayakulangara; Wang, Xuan; Hong, Chuan; Weber, Griffin M.; Liao, Katherine P.; Visweswaran, Shyam; Tan, Bryce W.Q.; Yuan, Wei; Gehlenborg, Nils; Muralidhar, Sumitra; Ramoni, Rachel; Kohane, Isaac S.; Xia, Zongqi; Cho, Kelly; Cai, Tianxi; Brat, Gabriel

doi:10.1101/2023.02.12.23285701

Cited by 5 publications

(15 citation statements)

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“…8). We found that an average of 42.3% patients assigned the U09.9 code were hospitalized after infection, and an average of 12.3% received intensive care -both of which can produce long-lasting symptoms that overlap with long COVID 5 . Physical and physiological effects of hospitalization or critical care are important patient-level factors that should not be misattributed to SARS-CoV-2 infection.…”

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confidence: 93%

“…We are an international consortium that has operationalized definitions of long COVID using health-agency guidelines, and established a chart-review procedure based on these definitions 5 . During this process, we identified three major challenges in using real-world data to study long COVID: ambiguity and heterogeneity in clinical coding of long COVID; inadequacy of diagnostic codes in capturing the constellation of symptoms; and biases in EHR data arising from variability in the number and kind of contacts with the healthcare system.…”

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confidence: 99%

“…We evaluated the extent to which patients with the ICD-10 code for this condition met our operationalized definitions based on guidelines from the World Health Organization (WHO) and the US Centers for Disease Control [5][6][7] . Our definition of long COVID based on WHO guidelines required that a patient present with at least two new-onset persistent symptoms lasting for 60 days after infection, whereas our definition based on CDC guidelines required that a patient present with at least one new-onset persistent symptom lasting for 30 days 5 .…”

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confidence: 99%

“…A comparison of real-world EHR and administrative data with manually extracted clinical information (obtained through chart review of patients with the U09.9 code) found that functional definitions of long COVID varied widely by provider, which led to inconsistencies in coding practice and adherence to clinical definitions. Among patients assigned the U09.9 code, an average of 40.2% met the more-stringent WHO definition, 58.3% had a single symptom that met the WHO definition, and 65.4% met the least-stringent CDC definition 5 . This shows that the ICD-10 code is an unreliable surrogate of the status of long-COVID disease in research.…”

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confidence: 99%

“…Leveraging textual data from EHRs may improve the ability to capture symptomatology. When we examined the data capture of symptoms by ICD-10 codes and by the natural-language processing of clinical narratives -such as clinician notes and discharge summaries -we found that the incorporation of narrative data substantially improved the identification of symptoms, compared with using diagnosis codes alone 5 . This shows the potential use of natural-language-processing techniques to ascertain a more-complete representation of a patient's health.…”

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confidence: 99%

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Potential pitfalls in the use of real-world data for studying long COVID

Honerlaw

Maripuri

Beaulieu‐Jones

et al. 2023

Nat Med

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confidence: 93%

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confidence: 99%

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confidence: 99%

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confidence: 99%

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confidence: 99%

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Potential pitfalls in the use of real-world data for studying long COVID

Honerlaw

Maripuri

Beaulieu‐Jones

et al. 2023

Nat Med

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Rates of ICD-10 Code U09.9 Documentation and Clinical Characteristics of VA Patients With Post–COVID-19 Condition

Wander,

Baraff,

Fox

et al. 2023

JAMA Netw Open

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ImportanceA significant proportion of SARS-CoV-2 infected individuals experience post–COVID-19 condition months after initial infection.ObjectiveTo determine the rates, clinical setting, risk factors, and symptoms associated with the documentation of International Statistical Classification of Diseases Tenth Revision (ICD-10), code U09.9 for post–COVID-19 condition after acute infection.Design, Setting, and ParticipantsThis retrospective cohort study was performed within the US Department of Veterans Affairs (VA) health care system. Veterans with a positive SARS-CoV-2 test result between October 1, 2021, the date ICD-10 code U09.9 was introduced, and January 31, 2023 (n = 388 980), and a randomly selected subsample of patients with the U09.9 code (n = 350) whose symptom prevalence was assessed by systematic medical record review, were included in the analysis.ExposurePositive SARS-CoV-2 test result.Main Outcomes and MeasuresRates, clinical setting, risk factors, and symptoms associated with ICD-10 code U09.9 in the medical record.ResultsAmong the 388 980 persons with a positive SARS-CoV-2 test, the mean (SD) age was 61.4 (16.1) years; 87.3% were men. In terms of race and ethnicity, 0.8% were American Indian or Alaska Native, 1.4% were Asian, 20.7% were Black, 9.3% were Hispanic or Latino, 1.0% were Native Hawaiian or Other Pacific Islander; and 67.8% were White. Cumulative incidence of U09.9 documentation was 4.79% (95% CI, 4.73%-4.87%) at 6 months and 5.28% (95% CI, 5.21%-5.36%) at 12 months after infection. Factors independently associated with U09.9 documentation included older age, female sex, Hispanic or Latino ethnicity, comorbidity burden, and severe acute infection manifesting by symptoms, hospitalization, or ventilation. Primary vaccination (adjusted hazard ratio [AHR], 0.80 [95% CI, 0.78-0.83]) and booster vaccination (AHR, 0.66 [95% CI, 0.64-0.69]) were associated with a lower likelihood of U09.9 documentation. Marked differences by geographic region and facility in U09.9 code documentation may reflect local screening and care practices. Among the 350 patients undergoing systematic medical record review, the most common symptoms documented in the medical records among patients with the U09.9 code were shortness of breath (130 [37.1%]), fatigue or exhaustion (78 [22.3%]), cough (63 [18.0%]), reduced cognitive function or brain fog (22 [6.3%]), and change in smell and/or taste (20 [5.7%]).Conclusions and RelevanceIn this cohort study of 388 980 veterans, documentation of ICD-10 code U09.9 had marked regional and facility-level variability. Strong risk factors for U09.9 documentation were identified, while vaccination appeared to be protective. Accurate and consistent documentation of U09.9 is needed to maximize its utility in tracking patients for clinical care and research. Future studies should examine the long-term trajectory of individuals with U09.9 documentation.

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Characterization of Long COVID Definitions and Clinical Coding Practices

Maripuri,

Dey,

Honerlaw

et al. 2023

Preprint

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BackgroundLong COVID characterized as post-acute sequelae of SARS-CoV-2 (PASC) has no universal clinical case definition. Recent efforts have focused on understanding long COVID symptoms and electronic health records (EHR) data provides a unique resource for understanding this condition. The introduction of the International Classification of Diseases (ICD)-10 code U09.9 for “Post COVID-19 condition, unspecified” to identify patients with long COVID has provided a method of evaluating this condition in EHRs, however, the accuracy of this code is unclear.ObjectiveOur study aimed to characterize the utility and accuracy of the U09.9 code across three healthcare systems - The Veterans Health Administration (VHA), Beth Israel Deaconess Medical Center (BIDMC) and The University of Pittsburgh Medical Center (UPMC) against patients identified with long COVID via a chart review by operationalizing the World Health Organization (WHO) and Centers for Disease Control (CDC) definitions.MethodsCOVID positive patients with either a U07.1 ICD code or positive polymerase chain reaction (PCR) test within these healthcare systems were identified for chart review. Among this cohort we sampled patients based on two approaches i) with a U09.9 code and ii) without a U09.9 code but with a new onset PASC related ICD code, which allows us to assess the sensitivity of the U09.9 code. To operationalize the long COVID definition based on health agency guidelines, we grouped symptoms into a “core” cluster of 11 commonly reported symptoms among long COVID patients and an extended cluster, that captured all other symptoms by disease domain.Patients having at least 2 symptoms persisting for >=60 days that were new onset after their COVID infection, with at least one symptom in the core cluster, were labeled as having long COVID per chart review. We compared the performance of the code across three health systems and across different time periods of the pandemic.ResultsA total of 900 patient charts were reviewed across 3 healthcare systems. The prevalence of long COVID among the cohort with the U09.9 ICD code, based on the operationalized WHO definition was between 23.2%-62.4% across these healthcare systems. We also evaluated a less stringent version of the WHO definition and the Centers for Disease Control (CDC) definition and observed an increase in the prevalence of long COVID at all three healthcare systems.ConclusionsThis is one of the first studies to evaluate the U09.9 code against a clinical case definition for long COVID, as well as the first to apply this definition to EHR data using a chart review approach on a nationwide cohort across multiple healthcare systems. This chart review approach can be implemented at other EHR systems to further evaluate the utility and performance of the U09.9 code.

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Characterizing the use of the ICD-10 Code for Long COVID in 3 US Healthcare Systems

Cited by 5 publications

References 13 publications

Potential pitfalls in the use of real-world data for studying long COVID

Potential pitfalls in the use of real-world data for studying long COVID

Rates of ICD-10 Code U09.9 Documentation and Clinical Characteristics of VA Patients With Post–COVID-19 Condition

Characterization of Long COVID Definitions and Clinical Coding Practices

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