Drawing on patient experiences, Providence study identifies four categories of long COVID and reveals importance of whole-person care

RENTON, Wash. [Oct. 16, 2023] – Long COVID, broadly defined as symptoms that continue or develop after an acute COVID-19 infection, has affected patients since the early months of the pandemic, yet much remains unknown about the syndrome. While research into its cause, prevalence and treatment is ongoing, a Providence study, recently published in the journal Scientific Reports, seeks to help practitioners better identify and care for patients by providing a more comprehensive understanding of how long COVID presents and the patient experience of this disease.

To understand the wide-ranging impacts of long COVID, researchers from the Providence Center for Outcomes Research & Education (CORE) and the Providence Research Network conducted a robust study of patient experiences of this syndrome using data collected from longitudinal surveys and narrative journal entries. Pointing to a need for a holistic approach to care, the analysis found that long COVID experiences can be classified into four categories, each with varying impairments to patients’ physical, mental and social health. The findings create a working model for four types of long COVID patient experiences: 1) a few lingering issues, 2) significant physical symptoms, 3) ongoing mental and cognitive struggles and 4) numerous compounding challenges. Thirty-six percent of participants fell into the third category, reporting fewer physical symptoms but multiple mental health and cognitive challenges that were significant enough to impact their social lives and day-to-day functioning five to six months after infection.

These complex patient experiences are illustrated by numerous testimonials captured by the study.

“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,” CORE Director Keri Vartanian, Ph.D. said. “Long COVID is an intersectional health challenge that impacts the whole person; our treatments and responses must be the same.”

This research is part of Providence’s My COVID Diary project, an ongoing study of more than 19,000 Providence patients across the health system’s seven-state footprint aimed at identifying and understanding COVID symptoms and experiences from the patient’s perspective. CORE’s long COVID research looked at self-reported outcomes from over 630 patients experiencing poor health six months after their COVID-19 diagnosis. Unlike previous examinations of long COVID that rely on data from electronic health records, this study integrates survey responses and rich patient narratives to explore the physical, mental and social impacts of long COVID and reveal a more complete picture of long COVID experiences from the patient perspective.

While the researchers point to the need for additional study and more data collection, the existing latent class analysis — or study that groups individuals by common characteristics — presented in this paper demonstrates the pervasive and varied nature of long COVID symptoms and the critical importance of taking an integrated, whole-person approach to treatment.

About Providence

Providence is a not-for-profit Catholic health system and one of the nation’s largest health systems, comprising a diverse family of organizations and driven by a belief that health is a human right. With 52 hospitals, over 900 physician clinics, senior services, supportive housing, and many other health and educational services, the health system and its partners employ more than 120,000 caregivers serving communities across seven states – Alaska, California, Montana, New Mexico, Oregon, Texas, and Washington, with system offices in Renton, Wash., and Irvine, Calif. Learn about our vision of health for a better world at Providence.org.

About CORE

The Center for Outcomes Research and Education (CORE) is an independent team of scientists, researchers, and data experts with a vision for a healthier, more equitable future. Based in Portland, Oregon, CORE works with a wide variety of cross-sector partners to take on today’s biggest barriers to better health and deliver insights that help shape and sustain healthier systems, policies, programs, and communities. Learn more at providenceoregon.org/core