Understanding long COVID based on patient experiences

March 12, 2024

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  • A study by Providence CORE and the Providence Research Network published in the journal Scientific Reports offers insights into patient experiences with long COVID.
  • Using patient narratives and survey data, CORE identified four groupings that encompass the wide-ranging experiences of long COVID patients.
  • The research illustrates how physical, mental, and social health are linked and must be considered together to effectively manage and treat patients with long COVID.

As the world continues grappling with the impacts of COVID-19, one of its most enduring challenges is the condition known as long COVID. For countless individuals, long COVID has proven to be a perplexing journey characterized by long-lasting symptoms that defy easy explanations.

A recent study by Providence CORE and the Providence Research Network published in the journal Scientific Reports takes a significant step toward demystifying long COVID and offers deeper insights into the patient journey that can help inform more impactful and appropriate long-term treatments focused on whole person health.

Read the full journal article at Scientific Reports or read on for more insights and highlights from the study. This research was also featured in a February 2024 article in TIME.

A patient-led movement

Long COVID was initially identified through patient-reported experiences. Near the onset of the pandemic, patients began sharing stories of symptoms lasting well beyond their initial COVID-19 infection. Those experiencing lasting symptoms such as fatigue, breathlessness, brain fog, and mental health challenges began calling themselves long-haulers, and the term long COVID was soon widely adopted. This patient-led movement changed our collective understanding of COVID-19.

Yet despite these patient-centered roots, much of the existing scientific research focuses on medical records rather than patient experiences. The CORE team set out to change that with innovative research through Providence's My COVID Diary project, which collected longitudinal surveys and narrative data for up to a year from more than 19,000 patients diagnosed with COVID-19. CORE's researchers selected 634 My COVID Diary participants with symptoms lasting six months beyond their initial infection and leveraged that data to provide an in-depth picture of the long COVID experience and its impacts. The resulting patient-centric perspective illustrates the profound implications of long COVID for people's physical, mental, and social health.

Categorizing long COVID experiences

Through this research, CORE identified four groupings that encompass the wide-ranging experiences of long COVID patients:

  • A few lingering issues: 17% of participants reported a few lingering problems that kept them from feeling completely recovered.
  • Significant physical symptoms: 18% reported multiple lingering physical symptoms that were significant enough to impede their overall functioning and day-to-day activities 5 to 6 months after infection.
  • Ongoing mental and cognitive struggles: 36% reported fewer physical symptoms but multiple mental health and cognitive challenges significant enough to impact their social lives and day-to-day functioning 5 to 6 months after infection.
  • Numerous compounding challenges: 28% reported managing multiple physical, mental, and cognitive challenges, significantly impacting their overall quality of life.

More than a third of study participants fell into the 3rd category, highlighting the significance of mental health and cognitive struggles in long COVID patients. Furthermore, all categories had some mix of social, physical, and mental health impacts, reminding us that this condition is not just about the body; it's a holistic health challenge that affects the entire person.

Amplifying patient voices

A look at some of the study's patient narratives offers a deeper appreciation for the multi-faceted struggles these individuals have faced. 

"Brain fog and trouble concentrating are still making school and work difficult, as is the constant fatigue."

“I’ve been experiencing anxiety and depression since being so sick from COVID... realizing that my lungs will never be the same is such a harsh reality!!”

"I am always exhausted. I am trying to work… [but] I haven't been able to work a whole week since I came back from COVID. I have no energy to go or do anything".

"Anxiety with any social situation including [the] grocery store or any store…severe panic attacks and stress."

“Muscle weakness, joint pain, constant headache, neck stiffness and pain, racing heart, muscle spasms, hands and fingers freeze. In the afternoon I can’t organize my brain, loss of words heavy fatigue, brain fog.”

“Sat/Sun cried all day, as very hard to function with brain fog, extreme fatigue, no taste or smell, swollen joints.”

As CORE Director Keri Vartanian explained: "Physical, mental, and social health are inextricably linked and must be considered together to effectively manage and treat the large population of patients with long COVID. Long COVID is an intersectional health challenge that impacts the whole person; our treatments and responses must be the same."

To learn more about the study, read the publication at Scientific Reports.

For more information about CORE, visit providenceoregon.org/CORE

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