Dilemmas seen in diagnosing and treating long COVID

A study of veterans showed great uncertainty about whether to attribute symptoms to long COVID or to patients' other existing conditions.

Diagnosing long COVID and providing clinical care for patients who have the condition or might have it can be challenging, according to a study of people who receive care from the Veterans Health Administration.

The study examined a national random sample of veterans with prior COVID infection and a diagnostic code for long COVID.  The researchers' qualitative analysis of electronic health records showed frequent substantial clinical uncertainty about whether patients’ symptoms stemmed from long COVID or from their other health conditions, explained Dr. Ann O'Hare, a professor of medicine (nephrology) at the University of Washington School of Medicine. She is a nephrologist and physician with the VA Puget Sound and a principal investigator with the VA COVID-19 Observational Research Collaboratory.

“This (uncertainty) typically led to additional diagnostic testing and specialist referral, which could lead to fragmented and potentially burdensome care," O'Hare said. 

The study was published Nov. 3 in JAMA Network Open. It highlights the complexities and challenges of diagnosing and caring for patients with long-COVID symptoms. The World Health Organization states that the condition involves a long list of symptoms that also are associated with a range of other health conditions, and can create difficulty in managing those cases, particularly in complex older adults.

Two main themes, clinical uncertainty and care fragmentation, emerged from the analysis, the authors wrote.

Medical record documentation reflected the difficulties of distinguishing symptoms of long COVID from those of other health conditions. Especially in complex patients, it was often hard to attribute symptoms to long COVID because alternative potential explanations existed, the researchers found. Rather than directly causing adverse health events, prior COVID-19 was often viewed as one of multiple possible contributors, especially in patients with limited functional reserve.

Patients’ accounts of how they had been affected by COVID-19 could be quite nuanced, the findings indicated. While some described an entirely new set of symptoms in the wake of their COVID infection, many described changes in the severity or quality of pre-existing symptoms. Uncertainty about the underlying cause and the expected course of patients’ symptoms typically led to a pattern of ongoing monitoring, diagnostic testing and specialist referral. 

Post-COVID care processes were often siloed from, and poorly coordinated with, other aspects of patients’ care. This lead to duplicated services and fragmented, potentially burdensome care. 

Although the study was not designed to answer the question of how best to care for patients with confirmed or suspected long COVID, the findings highlight challenges and limitations of a disease-based approach among members of this population, and argue for a more person-centered and individualized approach.

This was adapted from content created by the VA Puget Sound Health Care System.

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