[5 MIN READ]
In this article:
-
Long COVID impacts your physical, mental and social health.
-
A new study provides a unique perspective on the long COVID patient experience.
-
Research about long COVID is evolving, but resources are available for those struggling with the condition.
Long COVID studies: understanding post-COVID syndrome
In the years since the COVID-19 pandemic rocked the globe with a worldwide lockdown, medical experts have gained a greater understanding of how the infection spreads, treatment options and prevention. But for people who develop persistent symptoms after their initial COVID-19 infection, information and resources remain hard to find.
Researchers around the world are working to understand the underlying cause of long COVID, as well as identify treatments for the condition, how many people are impacted by it and why. A recent study published in the journal Scientific Reports provides a more comprehensive understanding of long COVID. Through patient testimonials that vividly illustrate the complex nature of long COVID and the challenges patients face, researchers at the Providence Center for Outcomes Research & Education (CORE) and the Providence Research Network explore a unique window into the long COVID patient experience.
“CORE’s research and other studies have revealed that COVID-19’s impacts often extend beyond patients’ physical health,” says Keri Vartanian, PhD, research scientist and director of CORE. “Long COVID is a condition with wide-ranging symptoms that can have a tremendous impact on a person’s mental and social health as well.”
What is long COVID?
Most often defined as symptoms or conditions that continue or develop after initial infection with the virus which causes COVID-19, long COVID includes a myriad of conditions that impact physical and mental health. The condition is difficult to identify clinically and study scientifically, because the signs and experiences can vary significantly from person to person, says Jason D. Goldman, M.D., an infectious disease doctor and organ transplant specialist at Providence Swedish.
Symptoms of long COVID
For many people, long COVID causes inconsistent symptoms that can be difficult to explain. Some people report joint pain, extreme tiredness, cognitive difficulties, and a lingering cough or congestion that impacts their daily living activities for months or longer after their COVID infection.
Long COVID-19 symptoms might include:
- Brain fog or trouble concentrating
- Chest pain
- Headache
- Difficulty sleeping and/or extreme fatigue
- Shortness of breath
- Changes to smell and/or taste
- Depression and anxiety
- Digestive issues, including diarrhea
How long COVID differs from acute COVID-19
Most people infected with COVID-19 fully recover after a few weeks. Four weeks after their initial infection, people who experience new or continuing symptoms may be diagnosed with long COVID. While long COVID can impact anyone who has been infected with COVID-19, some research suggests that people might be at a higher risk if they have a severe infection, have a weakened immune system, struggle with poorly managed health conditions or did not receive a COVID-19 vaccine.
Recent studies on long COVID
The CORE study reviewed thousands of surveys and journal entries through Providence’s My COVID Diary, an ongoing project that collects self-reported data from patients to better understand the physical, mental and social impact of COVID for up to a year after their acute infection. Unlike most studies that rely on electronic health records to analyze long COVID, My COVID Diary collects information on reported symptoms directly from patients. The result is a more comprehensive understanding of what long COVID feels like from a patient’s perspective and a more holistic understanding of the condition that can be used to shape more effective treatments and care for people with long COVID.
Key findings from 2023 research
More than 19,000 people from seven states shared their personal experiences with COVID-19 through My COVID Diary. The CORE study analyzed information reported by 634 COVID-19 patients who had lingering symptoms more than six months after their acute COVID-19 infection.
Through a combination of a patient-reported outcomes survey and the narrative data provided by the study participants, researchers identified four categories that encompass the range of long COVID experiences, each with varying impacts on patients’ physical, mental and social health.
Category 1: Patients with a few lingering issues.
Category 2: Patients experiencing significant physical symptoms.
Category 3: Patients facing ongoing mental and cognitive struggles.
Category 4: Patients dealing with numerous compounding challenges.
Nearly 40% of the study’s participants fell into the third category, which highlights the impact of the mental health and cognitive challenges that patients with long COVID experience.
Demographic insights and risk factors
Researchers are working to identify why some people develop long COVID symptoms and how to protect vulnerable populations. While long COVID can affect people who don’t have any symptoms of acute COVID-19 infection, the condition seems to happen more often in people who are severely ill during their acute COVID-19 infection.
Advances in long COVID treatment
According to Dr. Goldman, long COVID patients might benefit from enrolling in clinical trials. In addition, patients who participate in trials contribute to the body of understanding that will help develop treatments and prevention strategies for long COVID infection.
Emerging therapies
The National Institutes of Health (NIH) has several clinical trials underway at locations around the United States. The trials are investigating treatment options for long COVID including drugs, biologics, medical devices and other therapies as part of its Researching COVID to Enhance Recovery (RECOVER) Initiative. In addition, the RECOVER Initiative is working to identify biomarkers to help identify and diagnose long COVID.
Rehabilitation and management strategies
Clinicians have long understood that physical, mental and social health are linked. The CORE study emphasizes the importance of a holistic approach to care that includes a wide range of interventions to address both the clinical and mental health needs of long COVID patients. Providers and health systems play a key role in recognizing and treating long COVID as a complex health challenge that affects the whole person and their quality of life.
Ongoing research and future directions
CORE researchers next plan to conduct a smaller study that will compare the narrative data received through My COVID Diary to each patient’s electronic health information.
“As we continue to research long COVID, our next goal is to understand how the clinical data logged for each patient aligns with their self-reported experience and symptoms,” says Dr. Vartanian. “By looking at both types of data we hope to gain further insight into how patients with these lingering symptoms are identified and impacted.”
Global research initiatives
The World Health Organization (WHO) has put into place data collection systems to help improve national and international understanding of the impact of post-COVID-19 conditions. The goal of the initiative is to gather information that will help with future public health response planning and prepare for future research into the nature of COVID-19 infection.
The road ahead: what we can expect
Talking with your health care provider about your symptoms is the first step toward identifying whether you are impacted by long COVID. Writing down your symptoms and feelings can give your provider a better understanding of your experience.
Resources for long COVID patients
Information and resources for people experiencing long COVID are still emerging, and Dr. Vartanian says that many people are not getting the support they need.
“Long COVID exacerbates social challenges and can lead to isolation and a lack of interaction for people impacted by the condition,” she says. “Many people have health impacts that make working or going to school much more difficult. Our hope is that as our research efforts continue they will provide a framework that develops resources and support for long COVID patients.”
Support groups and forums
To meet the needs of patients diagnosed with long COVID, Providence has created a rehabilitation program that incorporates physical, speech and occupational therapies, as well as behavioral health, medical nutrition and specialties such as neurology, cardiology, pulmonology and neuropsychiatry as needed. Providence Mission Heritage Group is home to the innovative Post COVID-19 Recovery Program that provides care from a wide range of experts including specialists and wellness experts to help treat the unique range of long COVID symptoms. In addition, Providence St. Jude Memorial Foundation offers a multidisciplinary program to assist patients with lingering symptoms of acute COVID-19 infection. Services range from cognitive therapy to rebuilding strength and stamina.
The CDC has a helpful guide to various support groups that can assist people struggling to manage their long COVID symptoms.
Professional advice and guidance
Dr. Goldman says that the symptoms of long COVID eventually end for most people. As researchers and clinicians continue to gather information and statistics, the information will guide treatment and prevention strategies. Sharing information, including how your symptoms impact your daily living and how it has progressed since your acute COVID-19 infection, can lay the groundwork for future treatment options and resources to manage your condition.
Contributing caregiver
Keri Vartanian, PhD, is a research scientist and the director of CORE.
Jason Goldman, M.D., is an infectious disease doctor and organ transplant specialist at Providence Swedish.
Find a doctor
If you think you might have long COVID, or need to find a doctor, you can use our provider directory.
Download the Providence app
We’re with you, wherever you are. Make Providence’s app your personalized connection to your health. Schedule appointments, conduct virtual visits, message your doctor, view your health records and more. Learn more and download the app.
Related resources
For COVID long-haulers, rehabilitation can provide relief
Understanding long COVID based on patient experiences
Wish you could get rid of your COVID-19 symptoms sooner? Be part of a new study
This information is not intended as a substitute for professional medical care. Always follow your health care professional’s instructions.
About the Author
More Content by Providence Health Team
