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Complexity and Challenges of the Clinical Diagnosis and Management of Long COVID

Educational Objective
To identify the key insights or developments described in this article
1 Credit CME
Key Points

Question  What themes pertaining to long COVID can be identified in qualitative analysis of health records from the Department of Veterans Affairs health system?

Findings  This qualitative study including health records from 200 randomly sampled veterans identified 2 dominant themes: (1) clinical uncertainty: it was often unclear whether particular symptoms were due to long COVID, given the medical complexity and functional limitations of many patients and absence of specific markers for this condition, which led to ongoing monitoring, diagnostic testing, and referral; and (2) care fragmentation: post–COVID-19 care processes were often siloed from other care and could be burdensome to patients.

Meaning  These findings highlight the complexity of diagnosing and managing long COVID in clinical settings.


Importance  There is increasing recognition of the long-term health effects of SARS-CoV-2 infection (sometimes called long COVID). However, little is yet known about the clinical diagnosis and management of long COVID within health systems.

Objective  To describe dominant themes pertaining to the clinical diagnosis and management of long COVID in the electronic health records (EHRs) of patients with a diagnostic code for this condition (International Statistical Classification of Diseases and Related Health Problems, Tenth Revision [ICD-10] code U09.9).

Design, Setting, and Participants  This qualitative analysis used data from EHRs of a national random sample of 200 patients receiving care in the Department of Veterans Affairs (VA) with documentation of a positive result on a polymerase chain reaction (PCR) test for SARS-CoV-2 between February 27, 2020, and December 31, 2021, and an ICD-10 diagnostic code for long COVID between October 1, 2021, when the code was implemented, and March 1, 2022. Data were analyzed from February 5 to May 31, 2022.

Main Outcomes and Measures  A text word search and qualitative analysis of patients’ VA-wide EHRs was performed to identify dominant themes pertaining to the clinical diagnosis and management of long COVID.

Results  In this qualitative analysis of documentation in the VA-wide EHR, the mean (SD) age of the 200 sampled patients at the time of their first positive PCR test result for SARS-CoV-2 in VA records was 60 (14.5) years. The sample included 173 (86.5%) men; 45 individuals (22.5%) were identified as Black and 136 individuals (68.0%) were identified as White. In qualitative analysis of documentation pertaining to long COVID in patients’ EHRs 2 dominant themes were identified: (1) clinical uncertainty, in that it was often unclear whether particular symptoms could be attributed to long COVID, given the medical complexity and functional limitations of many patients and absence of specific markers for this condition, which could lead to ongoing monitoring, diagnostic testing, and specialist referral; and (2) care fragmentation, describing how post–COVID-19 care processes were often siloed from and poorly coordinated with other aspects of care and could be burdensome to patients.

Conclusions and Relevance  This qualitative study of documentation in the VA EHR highlights the complexity of diagnosing long COVID in clinical settings and the challenges of caring for patients who have or are suspected of having this condition.

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Article Information

Accepted for Publication: September 21, 2022.

Published: November 3, 2022. doi:10.1001/jamanetworkopen.2022.40332

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2022 O’Hare AM et al. JAMA Network Open.

Corresponding Author: Ann M. O’Hare, MA, MD, Health Services Research & Development Center of Innovation for Veteran-Centered and Value-Driven Care, VA Puget Sound Health Care System, 1660 S Columbian Way, Seattle, WA 98108 (ann.ohare@va.gov).

Author Contributions: Dr O’Hare had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: O’Hare, Taylor, Helfand, Tuepker, Bowling, Bohnert, Boyko, Ioannou.

Acquisition, analysis, or interpretation of data: O’Hare, Vig, Iwashyna, Taylor, Viglianti, Butler, Vranas, Nugent, Winchell, Laundry, Hynes, Maciejewski, Locke, Ioannou, Fox.

Drafting of the manuscript: O’Hare, Vig.

Critical revision of the manuscript for important intellectual content: O’Hare, Iwashyna, Taylor, Viglianti, Butler, Vranas, Helfand, Tuepker, Nugent, Winchell, Laundry, Bowling, Hynes, Maciejewski, Bohnert, Locke, Boyko, Ioannou, Fox.

Statistical analysis: O’Hare.

Obtained funding: O’Hare, Iwashyna, Bowling, Hynes, Maciejewski, Bohnert, Ioannou.

Administrative, technical, or material support: O’Hare, Iwashyna, Winchell, Laundry, Hynes, Maciejewski, Bohnert, Locke.

Supervision: Bowling.

Conflict of Interest Disclosures: Dr O’Hare reported receiving personal fees from the American Society of Nephrology; Devenir Foundation; Hammersmith Hospital; University of California, San Francisco; and JAMA Internal Medicine and that her spouse has received personal fees from and serves on the American Board of Internal Medicine outside the submitted work. Dr Hynes reported receiving grants from the Department of Veterans Affairs (VA) Health Services Research and Development Service (HSR&D), Pacific Source Community Services, and David & Lucille Packard Foundation and being a co-owner of Van Breemen & Hynes outside the submitted work. Dr Maciejewski reported owning stock in Amgen and that his spouse is employed by Amgen. Dr Boyko reported receiving nonfinancial support from the International Diabetes Federation outside the submitted work. No other disclosures were reported.

Funding/Support: The study was supported using data from the VA COVID-19 Shared Data Resource and the resources and facilities of the VA Informatics and Computing Infrastructure (VA HSR&D grant No. RES 13-457) and by VA HSR&D grant No. IIR-278 (Drs , Maciejewski, Boyko, Bohnert, and Ioannou), IIR-279 (Drs O’Hare, Iwashyna, Viglianti, Bowling, and Hynes), and SRCS 21-136 (Dr Hynes).

Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Group Information: The VA COVID Observational Research Collaboratory (CORC) members are Ann M. O’Hare, MA, MD; Elizabeth K. Vig, MD, MPH; Theodore J. Iwashyna, MD, PhD; Alexandra Fox, PhD; Janelle S. Taylor, PhD; Elizabeth M. Viglianti, MD; Catherine R. Butler, MD, MA; Kelly C. Vranas, MD, MCR; Mark Helfand, MD, MPH; Anaïs Tuepker, PhD, MPH; Shannon M. Nugent, PhD; Kara A. Winchell, MA; Ryan J. Laundry, BS; C. Barrett Bowling, MD, MSPH; Denise M. Hynes, RN, PhD; Matthew L. Maciejewski, PhD; Amy S. B. Bohnert, PhD; Emily R. Locke, MPH; Edward J. Boyko, MD, MPH; and George N. Ioannou, BMBCh, MS.

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