Long COVID Characteristics and Experience: A Descriptive Study From the Yale LISTEN Research Cohort

Mitsuaki Sawano; Yilun Wu; Rishi M Shah; Tianna Zhou; Adith S Arun; Pavan Khosla; Shayaan Kaleem; Anushree Vashist; Bornali Bhattacharjee; Qinglan Ding; Yuan Lu; César Caraballo; Frederick Warner; Chenxi Huang; Jeph Herrin; David Putrino; Teresa Michelsen; Liza Fisher; Cynthia Adinig; Akiko Iwasaki; Harlan M Krumholz

doi:10.1016/j.amjmed.2024.04.015

Long COVID Characteristics and Experience: A Descriptive Study From the Yale LISTEN Research Cohort

Am J Med. 2024 Apr 24:S0002-9343(24)00238-9. doi: 10.1016/j.amjmed.2024.04.015. Online ahead of print.

Authors

Mitsuaki Sawano¹, Yilun Wu², Rishi M Shah³, Tianna Zhou⁴, Adith S Arun⁴, Pavan Khosla⁴, Shayaan Kaleem⁵, Anushree Vashist⁶, Bornali Bhattacharjee⁷, Qinglan Ding⁸, Yuan Lu⁹, César Caraballo¹⁰, Frederick Warner¹, Chenxi Huang¹, Jeph Herrin¹¹, David Putrino¹², Teresa Michelsen¹³, Liza Fisher¹⁴, Cynthia Adinig¹⁴, Akiko Iwasaki¹⁵, Harlan M Krumholz¹⁶

Affiliations

¹ Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Conn; Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, Conn.
² Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Conn; Department of Biostatistics, Yale School of Public Health, New Haven, Conn.
³ Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Conn; Department of Applied Mathematics, Yale College, New Haven, Conn.
⁴ Yale School of Medicine, New Haven, Conn.
⁵ Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
⁶ Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Conn; The College at the University of Chicago, Chicago, Ill.
⁷ Center for Infection and Immunity, Yale School of Medicine, New Haven, Conn; Department of Immunobiology, Yale School of Medicine, New Haven, Conn.
⁸ College of Health and Human Sciences, Purdue University, West Lafayette, Ind.
⁹ Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Conn; Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, Conn; Department of Biomedical Informatics and Data Science, Yale School of Medicine, New Haven, Conn; Department of Chronic Disease Epidemiology, Yale School of Public Health, New Haven, Conn.
¹⁰ Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Conn; Department of Internal Medicine, Yale School of Medicine, New Haven, Conn.
¹¹ Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, Conn.
¹² Rehabilitation and Human Performance, Icahn School of Medicine at Mount Sinai, New York, NY.
¹³ Avocet Consulting, LLC, Hoodsport, Wash.
¹⁴ BIPOC Equity Agency, Washington, DC.
¹⁵ Center for Infection and Immunity, Yale School of Medicine, New Haven, Conn; Department of Immunobiology, Yale School of Medicine, New Haven, Conn; Howard Hughes Medical Institute, Chevy Chase, Md.
¹⁶ Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Conn; Section of Cardiovascular Medicine, Department of Internal Medicine, Yale School of Medicine, New Haven, Conn; Center for Infection and Immunity, Yale School of Medicine, New Haven, Conn; Department of Health Policy and Management, Yale School of Public Health, New Haven, Conn. Electronic address: harlan.krumholz@yale.edu.

PMID: 38663793
DOI: 10.1016/j.amjmed.2024.04.015

Abstract

Background: The experience of people with long COVID needs further amplification, especially with a comprehensive focus on symptomatology, treatments, and the impact on daily life and finances. Our intent is to describe the experience of people with long COVID symptomatology and characterize the psychological, social, and financial challenges they experience.

Methods: We collected data from individuals aged 18 and older reporting long COVID as participants in the Yale Listen to Immune, Symptom and Treatment Experiences Now study. The sample population included 441 participants surveyed between May 2022 and July 2023. We evaluated their demographic characteristics, socioeconomic and psychological status, index infection period, health status, quality of life, symptoms, treatments, prepandemic comorbidities, and new-onset conditions.

Results: Overall, the median age of the participants with long COVID was 46 years (interquartile range [IQR]: 38-57 years); 74% were women, 86% were non-Hispanic White, and 93% were from the United States. Participants reported a low health status measured by the Euro-QoL visual analog scale, with a median score of 49 (IQR: 32-61). Participants documented a diverse range of symptoms, with all 96 possible symptom choices being reported. Additionally, participants had tried many treatments (median number of treatments: 19, IQR: 12-28). They were also experiencing psychological distress, social isolation, and financial stress.

Conclusions: Despite having tried numerous treatments, participants with long COVID continued to experience an array of health and financial challenges-findings that underscore the failure of the healthcare system to address the medical needs of people with long COVID. These insights highlight the need for crucial medical, mental health, financial, and community support services, as well as further scientific investigation to address the complex impact of long COVID.

Keywords: COVID-19; Long COVID.