Study Highlights the Difficulty of Diagnosing and Treating Veterans Suspected of Having Long COVID

BACKGROUND:
The World Health Organization (WHO) has defined long COVID as “the illness that occurs in people with a history of probable or confirmed SARS-CoV-2 infection; usually within three months from the onset of COVID-19, with symptoms and effects that last for at least two months. The symptoms and effects… cannot be explained by an alternative diagnosis.” Conservative estimates suggest that at least 12% of people initially infected with the virus in the U.S. may have developed long COVID. This qualitative study sought to describe the clinical diagnosis and management of long COVID within the VA healthcare system. Using data from VA’s electronic health record (EHR), investigators identified a random, nation-wide sample of 200 VA patients who were assigned a new ICD-10 diagnostic code for long COVID, U09.9 between October 1, 2021, and March 1, 2022. Investigators then conducted a text word search and qualitative analysis of Veterans’ EHRs to identify dominant themes pertaining to the diagnosis and management of long COVID. They also examined patient demographics and clinical characteristics at the time of their first positive COVID test, as well as their healthcare use over the subsequent 30 days.

FINDINGS:

• Study findings highlight the roles of clinical uncertainty and care fragmentation in shaping the care of patients with or suspected of having long COVID.
  • There was substantial clinical uncertainty around the diagnosis and management of long COVID; most Veterans had one or more comorbid conditions with symptoms that might overlap those of long COVID. Also, some patients had prolonged or repeated hospital admissions or nursing home stays, blurring the boundaries between outcomes associated with acute infection, prolonged hospitalization, and long COVID. Patients’ own reports of how they had been impacted by COVID, as recorded in the EHR, often referenced an exacerbation of pre-existing symptoms rather than an entirely new set of symptoms. Uncertainty about the etiology of patients’ symptoms led to ongoing monitoring, diagnostic testing, and specialist referral.
  • Long COVID-specific care processes were often siloed and poorly coordinated with the care patients were already receiving for other health conditions and could lead to care that was burdensome and even unwanted, particularly among those with complex medical conditions and functional limitations.

IMPLICATIONS:

• Findings emphasize the interpretative complexity of characterizing long COVID in clinical settings and speak to the challenges of treating patients who have or are suspected of having long COVID, underscoring the need for a more person-centered and integrative approach.

LIMITATIONS:

• The degree to which the newly introduced diagnostic code for long COVID identifies individuals with this condition is unknown and may change over time, perhaps limiting transferability of findings to more recent time periods.

AUTHOR/FUNDING INFORMATION:
This study was supported by HSR&D. Dr. O’Hare is part of HSR&D’s Center of Innovation for Veteran-Centered and Value-Driven Care in Seattle.

O’Hare AM, Vig EK, Iwashyna TJ, et al., for the VA COVID Observational Research Collaboratory (CORC). Complexity and Challenges of the Clinical Diagnosis and Management of Long COVID. JAMA Network Open. 2022 Nov 3;5(11):e2240332.