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“Long COVID”: What we know as we near two years of the pandemic

The scientific community has made extraordinary progress in studying the effects of the novel coronavirus since it was first detected. More specifically, knowledge on “long COVID” has grown over time, and researchers continue to examine this disease. Here’s what the science is telling us:

Long COVID defined

Long COVID—also known as post-acute COVID-19, chronic COVID and post-acute sequelae of COVID-19 (PASC)—presents as a wide range of conditions people experience at least four to eight weeks after originally contracting the virus. According to the Centers for Disease Control & Prevention (CDC), these conditions can be new, returning or ongoing, and people experience them in different combinations.

Some symptoms of long COVID mirror those of COVID-19, including difficulty breathing, shortness of breath, cough, fatigue, fever and headache. COVID long-haulers may also experience changes in smell or taste, changes in menstrual period cycles, heart palpitations and difficulty thinking or concentrating, among other symptoms. These conditions may also worsen with physical or mental activity.

The CDC reports that those who experienced severe illness with COVID-19 may have multiorgan effects on heart, lung, kidney, skin and brain functions. Multisystem inflammatory syndrome (MIS), while rare, may occur during or immediately following a COVID-19 infection and can also lead to long COVID conditions.

Prevalence of long COVID

While different studies have reported varying rates of long COVID among COVID-19 patients, the data suggests it is by no means infrequent. For example, researchers at FAIR Health analyzed healthcare claim records from a database of nearly two million people and found that 23.2% had at least one post-COVID condition. Another recent study conducted in the U.K. analyzed real-world data (RWD) within the electronic health records (EHRs) of 81 million patients. The findings indicate that 57% of those with COVID-19 had at least one long COVID symptom at some point in the six months following the initial infection, and 36.6% experienced a long COVID symptom between 90 and 180 days after their initial diagnosis.

Long COVID in different patient populations

Both the FAIR Health and aforementioned U.K. studies found that those with more severe cases of COVID-19 had a higher incidence of long COVID, and long COVID was more frequent in the elderly and women. However, drilling down further into the data shows a more complex picture. For example, breathing problems and cognitive impairments were found to be more likely in older people and men, while headaches, abdominal symptoms, anxiety and depression occurred more frequently among young people and women.

Interestingly, long COVID has also been observed in a substantial rate of patients who did not experience severe cases of COVID-19: 27.5% of patients who were symptomatic but not hospitalized had post-COVID conditions, as did 19% of those with asymptomatic cases.

Additionally, it remains unclear to what degree vaccination lessens the likelihood of having long COVID. In a small study of fully vaccinated healthcare workers in Israel, for example, 19% of those with breakthrough COVID-19 cases then experienced long COVID symptoms six weeks after the initial diagnosis.

Preventative measures against long COVID

The best way to prevent long COVID is to prevent COVID-19. As recommended in a recent blog on monoclonal antibody treatment, healthcare organizations should continue promoting vaccination and other preventative measures like masks, well-ventilated spaces, physical distancing and hand hygiene to their patients.

Collaborating to combat long COVID

While we still have much to learn about long COVID, efforts are already underway to enhance research and assist impacted patients. One such organization is the COVID-19 Patient Recovery Alliance, founded by Michael Leavitt, former Governor of Utah and Secretary of Health and Human Services for President George W. Bush, and Nancy-Ann DeParle, former Assistant to the President and Deputy Chief of Staff for Policy for President Barack Obama and Administrator of the Centers for Medicare and Medicaid Services serving under President Bill Clinton.

Leading organizations across business, data and analytics, healthcare, academia and patient advocacy are working together to collect, analyze and link data from diverse sources, develop innovative models of care and advocate for long COVID patients—namely those who are essential workers, have high-cost clinical and support needs or come from underserved communities. Contributors include Johns Hopkins Medicine, the American Heart Association, New York-Presbyterian and Allscripts, to name a few. Veradigm®, a business unit of Allscripts, is a research partner for the alliance, utilizing data from several electronic health records to analyze the impact and burden of long COVID.

Additionally, Veradigm is a founding member of a consortium of leading healthcare companies that are pooling data to form the COVID-19 Research Database. The database provides government and academic researchers with free and rapid access to large-scale data in support of studies that help combat the pandemic. With the help of RWD, researchers can continue uncovering more about long COVID and its related issues.

Learn more about these initiatives on the websites for the COVID-19 Patient Recovery Alliance and the COVID-19 Research Database.

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