2024 update of the RECOVER-adult Long COVID research index

Geng, LN; Erlandson, KM; Hornig, M; et al., JAMA, February 2025

View Publication on PubMed

February 2025
JAMA

Short Summary

Scientists updated a prior RECOVER study to explore Long COVID symptoms reported by participants in the RECOVER-Adult Observational Cohort Study. They compared symptoms in people who had COVID-19 to those who did not have COVID-19 to find the symptoms that were most different. The updated study included 13,647 participants, compared to 9,764 in the original, and added 8 new symptoms based on patient and community feedback. Symptoms that were most different between people with and without COVID-19 include post-exertional malaise, fatigue, brain fog, dizziness, palpitations, smell or taste change, thirst, chronic cough, chest pain, shortness of breath, and sleep apnea. In addition, this research update classifies Long COVID symptoms into 5 groups of symptoms called clusters. The previous study focused on 4 clusters. This study update is important because it highlights the wide range of symptoms experienced by people with Long COVID. Understanding these symptoms will help researchers study Long COVID and look for treatments.

This summary was prepared by the RECOVER Initiative.

Publication Details

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.

Authors

Linda N Geng, Kristine M Erlandson, Mady Hornig, Rebecca Letts, Caitlin Selvaggi, Hassan Ashktorab, Ornina Atieh, Logan Bartram, Hassan Brim, Shari B Brosnahan, Jeanette Brown, Mario Castro, Alexander Charney, Peter Chen, Steven G Deeks, Nathaniel Erdmann, Valerie J Flaherman, Maher A Ghamloush, Paul Goepfert, Jason D Goldman, Jenny E Han, Rachel Hess, Ellie Hirshberg, Susan E Hoover, Stuart D Katz, J Daniel Kelly, Jonathan D Klein, Jerry A Krishnan, Joyce Lee-Iannotti, Emily B Levitan, Vincent C Marconi, Torri D Metz, Matthew E Modes, Janko Ž Nikolich, Richard M Novak, Igho Ofotokun, Megumi J Okumura, Sairam Parthasarathy, Thomas F Patterson, Michael J Peluso, Athena Poppas, Orlando Quintero Cardona, Jake Scott, Judd Shellito, Zaki A Sherif, Nora G Singer, Barbara S Taylor, Tanayott Thaweethai, Monica Verduzco-Gutierrez, Juan Wisnivesky, Grace A McComsey, Leora I Horwitz, Andrea S Foulkes, RECOVER Consortium

Keywords

Adult; Female; Humans; Male; Middle Aged; Post-Acute COVID-19 Syndrome/classification/complications/diagnosis/virology; Prospective Studies; Puerto Rico; SARS-CoV-2/pathogenicity; United States; Quality of Life