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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.

Abstract

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.

References
1.
World Health Organization. Coronavirus disease (COVID-19): post COVID-19 condition. Updated December 2021. Accessed May 23, 2022. https://www.who.int/news-room/questions-and-answers/item/coronavirus-disease-(covid-19)-post-covid-19-condition
2.
Munblit  D , O’Hara  ME , Akrami  A , Perego  E , Olliaro  P , Needham  DM .  Long COVID: aiming for a consensus.   Lancet Respir Med. 2022;10(7):632-634. doi:10.1016/S2213-2600(22)00135-7PubMedGoogle ScholarCrossref
3.
Carfì  A , Bernabei  R , Landi  F ; Gemelli Against COVID-19 Post-Acute Care Study Group.  Persistent Symptoms in Patients After Acute COVID-19.   JAMA. 2020;324(6):603-605. doi:10.1001/jama.2020.12603PubMedGoogle ScholarCrossref
4.
Nehme  M , Braillard  O , Chappuis  F , Courvoisier  DS , Guessous  I ; CoviCare Study Team.  Prevalence of Symptoms More Than Seven Months After Diagnosis of Symptomatic COVID-19 in an Outpatient Setting.   Ann Intern Med. 2021;174(9):1252-1260. doi:10.7326/M21-0878PubMedGoogle ScholarCrossref
5.
Tenforde  MW , Kim  SS , Lindsell  CJ ,  et al; IVY Network Investigators; CDC COVID-19 Response Team; IVY Network Investigators.  Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care Systems Network - United States, March-June 2020.   MMWR Morb Mortal Wkly Rep. 2020;69(30):993-998. doi:10.15585/mmwr.mm6930e1PubMedGoogle ScholarCrossref
6.
FAIR Health. Patients diagnosed with post-COVID conditions: an analysis of private healthcare claims using the official ICD-10 diagnostic code. Accessed September 28, 2022. https://s3.amazonaws.com/media2.fairhealth.org/whitepaper/asset/Patients%20Diagnosed%20with%20Post-COVID%20Conditions%20-%20A%20FAIR%20Health%20White%20Paper.pdf
7.
Al-Aly  Z , Xie  Y , Bowe  B .  High-dimensional characterization of post-acute sequelae of COVID-19.   Nature. 2021;594(7862):259-264. doi:10.1038/s41586-021-03553-9PubMedGoogle ScholarCrossref
8.
Cohen  K , Ren  S , Heath  K ,  et al.  Risk of persistent and new clinical sequelae among adults aged 65 years and older during the post-acute phase of SARS-CoV-2 infection: retrospective cohort study.   BMJ. 2022;376:e068414. doi:10.1136/bmj-2021-068414PubMedGoogle ScholarCrossref
9.
Bull-Otterson  L , Baca  S , Saydah  S ,  et al.  Post-COVID conditions among adult COVID-19 survivors aged 18-64 and ≥65 years: United States, March 2020-November 2021.   MMWR Morb Mortal Wkly Rep. 2022;71:713-717. doi:10.15585/mmwr.mm7121e1Google ScholarCrossref
10.
Nalbandian  A , Sehgal  K , Gupta  A ,  et al.  Post-acute COVID-19 syndrome.   Nat Med. 2021;27(4):601-615. doi:10.1038/s41591-021-01283-zPubMedGoogle ScholarCrossref
11.
Whitaker  M , Elliott  J , Chadeau-Hyam  M ,  et al.  Persistent COVID-19 symptoms in a community study of 606,434 people in England.   Nat Commun. 2022;13(1):1957. doi:10.1038/s41467-022-29521-zPubMedGoogle ScholarCrossref
12.
Cutler  DM .  The costs of long COVID.   JAMA Health Forum. 2022;3(5):e221809. doi:10.1001/jamahealthforum.2022.1809Google ScholarCrossref
13.
Mahase  E .  COVID-19: what do we know about “long COVID”?   BMJ. 2020;370:m2815. doi:10.1136/bmj.m2815PubMedGoogle ScholarCrossref
14.
Callard  F , Perego  E .  How and why patients made Long COVID.   Soc Sci Med. 2021;268:113426. doi:10.1016/j.socscimed.2020.113426PubMedGoogle ScholarCrossref
15.
Crook  H , Raza  S , Nowell  J , Young  M , Edison  P .  Long COVID—mechanisms, risk factors, and management.   BMJ. 2021;374(1648):n1648. doi:10.1136/bmj.n1648PubMedGoogle ScholarCrossref
16.
Vanichkachorn  G , Newcomb  R , Cowl  CT ,  et al.  Post–COVID-19 syndrome (long haul syndrome): description of a multidisciplinary clinic at Mayo Clinic and characteristics of the initial patient cohort.   Mayo Clin Proc. 2021;96(7):1782-1791. doi:10.1016/j.mayocp.2021.04.024PubMedGoogle ScholarCrossref
17.
Ladds  E , Rushforth  A , Wieringa  S ,  et al.  Persistent symptoms after COVID-19: qualitative study of 114 “long COVID” patients and draft quality principles for services.   BMC Health Serv Res. 2020;20(1):1144. doi:10.1186/s12913-020-06001-yPubMedGoogle ScholarCrossref
18.
Ladds  E , Rushforth  A , Wieringa  S ,  et al.  Developing services for long COVID: lessons from a study of wounded healers.   Clin Med (Lond). 2021;21(1):59-65. doi:10.7861/clinmed.2020-0962PubMedGoogle ScholarCrossref
19.
Rushforth  A , Ladds  E , Wieringa  S , Taylor  S , Husain  L , Greenhalgh  T .  Long COVID—the illness narratives.   Soc Sci Med. 2021;286:114326. doi:10.1016/j.socscimed.2021.114326PubMedGoogle ScholarCrossref
20.
Taylor  AK , Kingstone  T , Briggs  TA ,  et al.  ‘Reluctant pioneer’: a qualitative study of doctors’ experiences as patients with long COVID.   Health Expect. 2021;24(3):833-842. doi:10.1111/hex.13223PubMedGoogle ScholarCrossref
21.
Kingstone  T , Taylor  AK , O’Donnell  CA , Atherton  H , Blane  DN , Chew-Graham  CA .  Finding the ‘right’ GP: a qualitative study of the experiences of people with long-COVID.   BJGP Open. 2020;4(5):bjgpopen20X101143. doi:10.3399/bjgpopen20X101143PubMedGoogle ScholarCrossref
22.
Humphreys  H , Kilby  L , Kudiersky  N , Copeland  R .  Long COVID and the role of physical activity: a qualitative study.   BMJ Open. 2021;11(3):e047632. doi:10.1136/bmjopen-2020-047632PubMedGoogle ScholarCrossref
23.
Macpherson  K , Cooper  K , Harbour  J , Mahal  D , Miller  C , Nairn  M .  Experiences of living with long COVID and of accessing healthcare services: a qualitative systematic review.   BMJ Open. 2022;12(1):e050979. doi:10.1136/bmjopen-2021-050979PubMedGoogle ScholarCrossref
24.
Duerlund  LS , Shakar  S , Nielsen  H , Bodilsen  J .  Positive predictive value of the ICD-10 diagnosis code for long-COVID.   Clin Epidemiol. 2022;14:141-148. doi:10.2147/CLEP.S344515PubMedGoogle ScholarCrossref
25.
Walker  AJ , MacKenna  B , Inglesby  P ,  et al; (The OpenSAFELY Collaborative).  Clinical coding of long COVID in English primary care: a federated analysis of 58 million patient records in situ using OpenSAFELY.   Br J Gen Pract. 2021;71(712):e806-e814. doi:10.3399/BJGP.2021.0301PubMedGoogle ScholarCrossref
26.
Butler  CR , Wightman  A , Richards  CA ,  et al.  Thematic analysis of the health records of a national sample of US veterans with advanced kidney disease evaluated for transplant.   JAMA Intern Med. 2021;181(2):212-219. doi:10.1001/jamainternmed.2020.6388PubMedGoogle ScholarCrossref
27.
O’Hare  AM , Butler  CR , Taylor  JS ,  et al.  Thematic analysis of hospice mentions in the health records of veterans with advanced kidney disease.   J Am Soc Nephrol. 2020;31(11):2667-2677. doi:10.1681/ASN.2020040473PubMedGoogle ScholarCrossref
28.
Wong  SPY , McFarland  LV , Liu  CF , Laundry  RJ , Hebert  PL , O’Hare  AM .  Care practices for patients with advanced kidney disease who forgo maintenance dialysis.   JAMA Intern Med. 2019;179(3):305-313. doi:10.1001/jamainternmed.2018.6197PubMedGoogle ScholarCrossref
29.
Wong  SP , Vig  EK , Taylor  JS ,  et al.  Timing of initiation of maintenance dialysis: a qualitative analysis of the electronic medical records of a national cohort of patients from the Department of Veterans Affairs.   JAMA Intern Med. 2016;176(2):228-235. doi:10.1001/jamainternmed.2015.7412PubMedGoogle ScholarCrossref
30.
Department of Veterans Affairs. VA COVID-19 Shared Data Resource. Accessed May 23, 2022. https://www.hsrd.research.va.gov/for_researchers/cyber_seminars/archives/3810-notes.pdf
31.
Elo  S , Kyngäs  H .  The qualitative content analysis process.   J Adv Nurs. 2008;62(1):107-115. doi:10.1111/j.1365-2648.2007.04569.xPubMedGoogle ScholarCrossref
32.
Sandelowski  M .  Qualitative analysis: what it is and how to begin.   Res Nurs Health. 1995;18(4):371-375. doi:10.1002/nur.4770180411PubMedGoogle ScholarCrossref
33.
Krippendorff  K , Bermejo  F .  On Communicating: Otherness, Meaning, and Information. Routledge; 2009.
34.
Glaser  BG , Strauss  AL .  The Discovery of Grounded Theory: Strategies for Qualitative Research. Weidenfeld and Nicolson; 1968.
35.
Corbin  J , Strauss  A .  Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 3rd ed. Sage Publications; 2008. doi:10.4135/9781452230153
36.
Matta  J , Wiernik  E , Robineau  O ,  et al; Santé, Pratiques, Relations et Inégalités Sociales en Population Générale Pendant la Crise COVID-19–Sérologie (SAPRIS-SERO) Study Group.  Association of self-reported COVID-19 infection and SARS-CoV-2 serology test results with persistent physical symptoms among French adults during the COVID-19 pandemic.   JAMA Intern Med. 2022;182(1):19-25. doi:10.1001/jamainternmed.2021.6454PubMedGoogle ScholarCrossref
37.
Barker  K .  Self-help literature and the making of an illness identity: the case of fibromyalgia syndrome (FMS).   Soc Probl. 2002;49(3):279-300. doi:10.1525/sp.2002.49.3.279Google ScholarCrossref
38.
Ware  NC .  Society, mind and body in chronic fatigue syndrome: an anthropological view.   Ciba Found Symp. 1993;173:62-73.PubMedGoogle Scholar
39.
Ware  NC , Kleinman  A .  Culture and somatic experience: the social course of illness in neurasthenia and chronic fatigue syndrome.   Psychosom Med. 1992;54(5):546-560. doi:10.1097/00006842-199209000-00003PubMedGoogle ScholarCrossref
40.
Ware  NC .  Suffering and the social construction of illness: the delegitimation of the illness experience in chronic fatigue syndrome.   Med Anthropol Q. 1992;6(4):347-361. doi:10.1525/maq.1992.6.4.02a00030Google ScholarCrossref
41.
Kleinman  A .  The Illness Narratives: Suffering, Healing, and the Human Condition. Basic Books; 1988.
42.
Bloeser  K , McCarron  KK , Merker  VL ,  et al.  “Because the country, it seems though, has turned their back on me”: experiences of institutional betrayal among veterans living with Gulf War illness.   Soc Sci Med. 2021;284:114211. doi:10.1016/j.socscimed.2021.114211PubMedGoogle ScholarCrossref
43.
Zavestoski  S , Brown  P , McCormick  S , Mayer  B , D’Ottavi  M , Lucove  JC .  Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US.   Soc Sci Med. 2004;58(1):161-175. doi:10.1016/S0277-9536(03)00157-6PubMedGoogle ScholarCrossref
44.
Tosato  M , Carfì  A , Martis  I ,  et al; Gemelli Against COVID-19 Post-Acute Care Team.  Prevalence and predictors of persistence of COVID-19 symptoms in older adults: a single-center study.   J Am Med Dir Assoc. 2021;22(9):1840-1844. doi:10.1016/j.jamda.2021.07.003PubMedGoogle ScholarCrossref
45.
Liu  YH , Wang  YR , Wang  QH ,  et al.  Post-infection cognitive impairments in a cohort of elderly patients with COVID-19.   Mol Neurodegener. 2021;16(1):48. doi:10.1186/s13024-021-00469-wPubMedGoogle ScholarCrossref
46.
Graham  J . “That’s just part of aging”: long COVID symptoms are often overlooked in seniors. Kaiser Health News. May 18, 2022. Accessed September 28, 2022. https://khn.org/news/article/long-covid-symptoms-seniors/
47.
Tinetti  ME , Fried  T .  The end of the disease era.   Am J Med. 2004;116(3):179-185. doi:10.1016/j.amjmed.2003.09.031PubMedGoogle ScholarCrossref
48.
Charmaz  K .  Constructing Grounded Theory. 2nd ed. Sage Publications; 2014.
49.
Patton  MQ .  Qualitative Research and Evaluation Methods: Integrating Theory and Practice. 3rd ed. Sage Publications; 2002.
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