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Long COVID
Evaluating and Managing Patients With Long COVID

Released: December 13, 2022

Expiration: December 12, 2023

Fernando Carnavali
Fernando Carnavali, MD
Renslow Sherer
Renslow Sherer, MD
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Key Takeaways

  • Validation of patients’ long COVID symptoms and concerns is of utmost importance.
  • The symptoms and disease course for each individual patient with long COVID are varied, making shared decision a key component of treatment plan creation.

How does your knowledge of long COVID lead you to individualize your treatment plan?
The number of unknowns surrounding long COVID is immense. These include a multifactorial disease pathogenesis, the lack of diagnostic and therapeutic biomarkers, potential variations of the illness with new SARS-CoV-2 variants, and the evolving neurological and psychiatric symptoms. These uncertainties challenge a healthcare professional’s ability to individualize a treatment plan while underscoring its importance due to the heterogeneity of the clinical presentations of long COVID.

Nevertheless, as the evidence base for long COVID treatment is in formation and there are no treatments with proven efficacy, shared decision-making in selecting patient management options should be clearly presented to the patient as a norm for long COVID care. This includes a conservative approach that prioritizes referrals for specialty services and limits diagnostic evaluation to the most consequential signs and symptoms of long COVID.

In all patient care considerations, the mental health of the individual should be a primary consideration. Effective mental health screening is a key element in the individualization of long COVID patient care. GAD-7, PHQ-2 or PHQ-9, and Fatigue Scale scores are simple and useful tools for use at baseline, and ongoing monitoring should be documented in every visit as indicated.

Disability issues and needs must be documented carefully and addressed to ensure that an individual with long COVID receives coverage for services for this condition in both public and private healthcare settings. Although the US Department of Health and Human Services recognized that long COVID can be a disabling illness, there is a high hurdle for persons with long COVID to receive Supplemental Security Income and Social Security Disability Insurance disability benefits that include the requirement of illness for more than 12 months and the inability to work.

Regular follow-up visits at least every 3 months are appropriate, and more frequent visits are encouraged for more severe or rapidly changing presentations. The CDC recommends that primary caregivers manage patients with long COVID with a conservative general approach, and with specialty referrals in selected cases for specific diagnostic or management objectives.

How does the current knowledge of the pathophysiology of long COVID lead to your decisions on next steps?
Several mechanisms of disease have been proposed to explain the pathophysiology of long COVID. A complex combination of postviral multisystemic dysfunctions, dysregulations, and residual viral presence may explain the large number and diversity of symptoms that a single patient can have.

What we know for certain is that all affected patients are in a vulnerable situation, and because the current knowledge of this illness is limited, decisions on next steps must be carefully evaluated with a conservative approach.

Providing validation is the first step for all patients with long COVID, as all are living with uncertainty, and some patients experience opposition to the legitimacy of their symptoms, both at work and at home.

Nevertheless, symptomatic treatment is available and should be considered for all patients as needed. For example, effective therapies exist for depression, anxiety, and postural orthostatic tachycardia syndrome, only to name a few common long COVID symptoms.

Strategies to address exertional fatigue and its physical, emotional, and cognitive dimensions can be borrowed from the experience with patients with chronic fatigue syndrome using the strategy of pacing. This means encouraging people with long COVID to avoid rushing to return to pre-COVID activities that might trigger a long COVID symptom relapse. Rather, we should encourage them to adopt a gradual pace that is within their new capabilities.

In addition, as there are many supportive treatments being tried and discussed in public forums without significant data supporting their usage, time must be dedicated to answering patients’ questions about these treatments as well. This is important because these untested treatments have the potential for serious adverse events.

Will antiviral therapies such as nirmatrelvir, remdesivir, and molnupiravir hold any therapeutic value for long COVID? Although the answer is currently not known, a recent study of people with acute COVID-19 that reviewed electronic healthcare records of the US Department of Veterans Affairs suggested that acute COVID-19 treatment with nirmatrelvir plus ritonavir within 5 days of symptom onset was associated with a 25% reduced risk of long COVID conditions that included shortness of breath, neurocognitive impairment, heart and kidney disease, and blood disorders. These promising findings encourage further consideration of antiviral therapies as potential treatments for long COVID.

The National Institutes of Health–funded RECOVER study aims to provide the answers to fundamental questions about long COVID. For example, what symptoms after COVID-19 infection are most helpful to identify long COVID? Are there different types of long COVID with distinct groups of symptoms? How do long COVID symptoms change over time, and how long do the symptoms last?

Until definitive answers to these questions are determined, setting realistic goals that are patient centered using shared decision-making toward an individualized patient care plan for people with long COVID is fundamental.

Your Thoughts?
What strategies and treatments for your patients with long COVID have been successful? Join the conversation by posting a comment below.