Long-time COVID patients can experience many of the same lasting negative effects on their physical, mental and social well-being as people suffering from other non-COVID diseases, new research suggests.
Results will be peer-reviewed on December 1, 2022 JAMA network open, are based on comparing people known to have been infected with COVID-19 with people with similar symptoms who have tested negative for COVID. The researchers found that 40% of the COVID-positive and 54% of the COVID-negative group reported moderate to severe residual symptoms three months after enrollment in the study.
“Many diseases, including COVID, can result in symptoms that affect well-being for months after initial infection, which is what we saw here,” said lead author Lauren Wisk, assistant professor of medicine in the Department of General Internal Medicine and Health Service Research at David Geffen School of Medicine at UCLA. “Because these changes look similar for COVID and COVID+ participants, it suggests that the experience of the pandemic itself, and the stress it poses, may play a role in slowing people’s recovery from illness.”
The study included both people with acute COVID and those without COVID (but ill with another illness) to examine the impact of COVID on their own well-being, including in comparison to the general population, Wisk noted.
“We found that COVID-positive and COVID-negative groups are more alike than different when it comes to well-being, but both still have poorer well-being scores than the general population.”
The multi-site study was conducted in English and Spanish under the umbrella of INSPIRE (Innovative Support for Patients with SARS-CoV-2 Infections Registry), a project funded by the Centers for Disease Control and Prevention.
Participating campuses include the University of California, Los Angeles; Rush University Medical Center in Chicago; University of California, San Francisco; University of Washington in Seattle; Yale University; UT Health Houston; the University of Texas Southwest; and Thomas Jefferson University in Philadelphia.
The 1,000 participants in the study were 18 years of age or older who:
- Tested for COVID-19 with either positive or negative test results and no prior COVID-19 diagnosis within 42 days of study enrollment;
- Had symptoms known to be related to COVID-19, such as cough, fever, headache, or fatigue at the time of the test;
- Had access to an internet-connected device such as a smartphone, tablet or computer to participate in online surveys; and
- Completion of an initial survey at the time of enrollment in the study and a follow-up survey three months later asking about physical functioning, anxiety, depression, fatigue, social participation, sleep disorders, pain interference, and cognitive function.
Of these participants, 722 (72%) tested positive for COVID and 278 (28%) tested negative.
Overall, three months after infection, those who tested positive for COVID had self-reported physical and mental health symptoms similar to those who developed other non-COVID illnesses during the pandemic. However, the COVID-positive group experienced better improvements in their social well-being than the COVID-negative group.
The study may be limited by the possibility that some of the sickest patients at highest risk for long COVID may not have been able or willing to participate; a lack of clarity about what medical conditions some symptomatic COVID-negative participants suffered from at enrollment, such as: the fact that participants were recruited from December 2020 to September 2021, which may render the results inapplicable to subsequent COVID variants; and that COVID-19 tests are sometimes inaccurate. Finally, the participants’ well-being was assessed 3 months after their initial illness; Many diseases take time to recover, and comparing improvements in symptoms over time will be essential for a meaningful understanding of long-COVID.
Nonetheless, the results underscore the importance of comparing COVID-positive and COVID-negative individuals to assess the impact of SARS-CoV-2 on the population. “Most other studies on long COVID don’t have such a control group,” said Dr. Joann Elmore, co-senior author of the paper and professor of medicine in the Department of General Internal Medicine and Health Research at the David Geffen School of Medicine at UCLA.
“Researchers and physicians now have a better understanding of wellbeing outcomes related to COVID-19 as a result of this study,” said Elmore, who is also the principal investigator at the UCLA site. “The findings underscore the potentially far-reaching impact of the pandemic on our overall health, including the less-haunted emotional, social and mental aspects, alongside the highly recognized physical effects.”
The Centers for Disease Control and Prevention and the National Center for Immunization and Respiratory Diseases (75D30120C08008) funded this research.
Alongside UCLA researchers Lauren Wisk (first author) and Dr. Joann Elmore (co-senior author), other study authors on this article are co-senior authors Dr. Graham Nichol, Dr. Kelli O’Laughlin and Dr. Nicole Gentile and Jill Anderson from the University of Washington; dr Michael Gottlieb, Katherine Koo and Dr. Robert Weinstein of Rush University; dr Erica Spatz, Huihui Yu, Zhenqiu Lin and Dr. Arjun Venkatesh from Yale University; dr Ralph Wang and Dr. Juan Carlos Montoy of UC San Francisco; dr Benjamin Slovis and Dr. Anna Marie Chang of Thomas Jefferson University; Sharon Saydah, Ian Plumb, and Jin-Mann Lin from the Centers for Disease Control and Prevention; dr Samuel McDonald and Dr. Ahamed Idris from the University of Texas Southwestern; dr Ryan Huebinger and Mandy Hill from the University of Texas Houston; and dr Bala Hota by Tendo Systems.