Challenges in diagnosing and caring for patient having long COVID

“In our qualitative analysis of the electronic health records of a national random sample of Veterans with prior COVID infection and a diagnostic code for long COVID there was often substantial clinical uncertainty about whether patients’ symptoms were due to long COVID or to one or more of their other health conditions,” explained VA Puget Sound Nephrologist and Physician Ann O’Hare, who is a CORC principal investigator and also a University of Washington School of Medicine professor. “This typically led to additional diagnostic testing and specialist referral which could lead to fragmented and potentially burdensome care.”

The study was published November 3 in the Journal of the American Medical Association (JAMA) Network Open. It highlights the complexities and challenges of diagnosing, caring, and managing patients with, or suspected of having, long COVID. The WHO definition of long COVID which includes a long list of relatively common symptoms that overlap with those associated with a range of other health conditions, will likely be very difficult to operationalize in clinical settings, and particularly in complex older adults.

The authors identified two main themes: clinical uncertainty and care fragmentation.

Clinical uncertainly

The study found that medical record documentation spoke to the difficulties of distinguishing the symptoms of long COVID from those of other health conditions.  Especially in complex patients, it was often hard to pin patients’ symptoms on long COVID as there were usually alternative potential explanations for what they were experiencing.  Rather than directly causing adverse health events, prior COVID-19 was often viewed as one among many possible contributors, especially in patients with limited functional reserve. Patients’ accounts of how they had been impacted by COVID-19 could be quite nuanced. 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 expected course of patients’ symptoms typically led to a pattern of ongoing monitoring, diagnostic testing, and specialist referral. 

Care fragmentation

Post-COVID care processes were often siloed from, and poorly coordinated with other aspects of patients’ care leading to duplication of services and fragmented and potentially burdensome care.  While the study was not designed to answer the question of how best to care for patients with, or suspected of having, long COVID, the authors’ findings do highlight some challenges and limitations of a disease-based approach among members of this population and argue for a more person centered and individualized approach.

About CORC

CORC aims to improve Veteran’s health by conducting and supporting rigorous research to understand the long-term effects of SARS-CoV-2 infection while fostering research collaborations within and outside of the Department of Veterans Affairs. More information can be found at https://www.research.va.gov/corc/default.cfm.

About VA Puget Sound Health Care System:

VA Puget Sound provides comprehensive care to more than 150,000 enrolled Veterans across the Pacific Northwest at one of its 11 care sites: two main campuses (American Lake and Seattle), seven outpatient clinics (Edmonds, Everett, Mount Vernon, Olympia, Port Angeles, Puyallup and Silverdale) and two Community Resource & Referral Centers (Georgetown in Seattle and Renton). As the VA’s 4th largest research program, VA Puget Sound has research in virtually every major clinical department, including: TBI and multiple blast exposures; memory improvement and Alzheimer's Disease; PTSD and deployment health; Parkinson’s Disease; diabetes; cancer; substance abuse; lower limb prosthetics; genomics; and Health Services. Additionally, it has seven nationally recognized Centers of Excellence (in areas from limb-loss prevention and prosthetic engineering to primary care education and substance abuse treatment). For more information visit www.va.gov/puget-sound-health-care or call 800-329-8387.  For Veterans in Crisis, please use the Veterans Crisis line at 800-273-8255 (press 1).

Veterans who have not explored health care eligibility are encouraged to find out by visiting https://www.va.gov/health-care/eligibility/ or by calling 877-222-8387 to learn more.

Tami Begasse, Public Affairs Officer

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