Affiliations 

  • 1 Department of Medicine, School of Medicine, Stanford University, Stanford, California
  • 2 Division of Infectious Diseases, Department of Medicine, University of Colorado Anschutz Medical Campus, Aurora
  • 3 RECOVER patient representative, New York, New York
  • 4 RECOVER patient/caregiver representative, New York, New York
  • 5 Massachusetts General Hospital Biostatistics, Boston
  • 6 College of Medicine, Howard University, Washington, DC
  • 7 Case Western Reserve University, Cleveland, Ohio
  • 8 Icahn School of Medicine at Mount Sinai, New York, New York
  • 9 Department of Medicine, NYU Grossman School of Medicine, New York, New York
  • 10 University of Utah Health, Salt Lake City
  • 11 Department of Medicine, University of Kansas Medical Center, Kansas City
  • 12 Department of Medicine, Women's Guild Lung Institute, Los Angeles, California
  • 13 University of California, San Francisco
  • 14 Division of Infectious Diseases, Department of Medicine, University of Alabama at Birmingham
  • 15 Department of Pediatrics, University of California San Francisco
  • 16 Tufts Medical Center, Boston, Massachusetts
  • 17 Swedish Center for Research and Innovation, Providence Swedish Medical Center, Seattle, Washington
  • 18 Division of Pulmonary and Critical Care, Department of Medicine, School of Medicine, Emory University, Atlanta, Georgia
  • 19 Departments of Population Health Sciences and Internal Medicine, Spencer Fox Eccles School of Medicine, University of Utah, Salt Lake City
  • 20 Intermountain Health, Salt Lake City, Utah
  • 21 Sanford Health, Sioux Falls, South Dakota
  • 22 ILLInet RECOVER, Chicago, Illinois
  • 23 College of Medicine, University of Arizona, Phoenix
  • 24 Department of Epidemiology, School of Public Health, University of Alabama at Birmingham
  • 25 Division of Infectious Diseases, Department of Medicine, School of Medicine, Emory University, Atlanta, Georgia
  • 26 Department of Obstetrics and Gynecology, University of Utah Health, Salt Lake City
  • 27 Department of Medicine, Cedars-Sinai Medical Center, Los Angeles, California
  • 28 Department of Immunobiology, College of Medicine, University of Arizona, Tucson
  • 29 Departments of Pediatrics, Internal Medicine, and Health Policy, University of California, San Francisco
  • 30 College of Medicine, University of Arizona, Tucson
  • 31 University of Texas Health Science Center at San Antonio
  • 32 Warren Alpert Medical School, Brown University, Providence, Rhode Island
  • 33 Stanford Tri-Valley Section, Stanford Hospital Medicine, Pleasanton, California
  • 34 Louisiana State University, New Orleans
  • 35 Case Western Reserve University and Metrohealth Medical Center, Cleveland, Ohio
  • 36 Case Western Reserve University and University Hospitals of Cleveland, Cleveland, Ohio
JAMA, 2024 Dec 18.
PMID: 39693079 DOI: 10.1001/jama.2024.24184

Abstract

IMPORTANCE: Classification of persons with long COVID (LC) or post-COVID-19 condition must encompass the complexity and heterogeneity of the condition. Iterative refinement of the classification index for research is needed to incorporate newly available data as the field rapidly evolves.

OBJECTIVE: To update the 2023 research index for adults with LC using additional participant data from the Researching COVID to Enhance Recovery (RECOVER-Adult) study and an expanded symptom list based on input from patient communities.

DESIGN, SETTING, AND PARTICIPANTS: Prospective, observational cohort study including adults 18 years or older with or without known prior SARS-CoV-2 infection who were enrolled at 83 sites in the US and Puerto Rico. Included participants had at least 1 study visit taking place 4.5 months after first SARS-CoV-2 infection or later, and not within 30 days of a reinfection. The study visits took place between October 2021 and March 2024.

EXPOSURE: SARS-CoV-2 infection.

MAIN OUTCOMES AND MEASURES: Presence of LC and participant-reported symptoms.

RESULTS: A total of 13 647 participants (11 743 with known SARS-CoV-2 infection and 1904 without known prior SARS-CoV-2 infection; median age, 45 years [IQR, 34-69 years]; and 73% were female) were included. Using the least absolute shrinkage and selection operator analysis regression approach from the 2023 model, symptoms contributing to the updated 2024 index included postexertional malaise, fatigue, brain fog, dizziness, palpitations, change in smell or taste, thirst, chronic cough, chest pain, shortness of breath, and sleep apnea. For the 2024 LC research index, the optimal threshold to identify participants with highly symptomatic LC was a score of 11 or greater. The 2024 index classified 20% of participants with known prior SARS-CoV-2 infection and 4% of those without known prior SARS-CoV-2 infection as having likely LC (vs 21% and 5%, respectively, using the 2023 index) and 39% of participants with known prior SARS-CoV-2 infection as having possible LC, which is a new category for the 2024 model. Cluster analysis identified 5 LC subtypes that tracked quality-of-life measures.

CONCLUSIONS AND RELEVANCE: The 2024 LC research index for adults builds on the 2023 index with additional data and symptoms to help researchers classify symptomatic LC and its symptom subtypes. Continued future refinement of the index will be needed as the understanding of LC evolves.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.