tetano
Editor, Senior Moderator
JAMA Netw Open
. 2025 Aug 1;8(8):e2526506.
doi: 10.1001/jamanetworkopen.2025.26506. Variability in Long COVID Definitions and Validation of Published Prevalence Rates
Lauren E Wisk[SUP] 1 [/SUP], Michelle L'Hommedieu[SUP] 1 [/SUP], Kate Diaz Roldan[SUP] 1 [/SUP], Imtiaz Ebna Mannan[SUP] 2 [/SUP], Erica S Spatz[SUP] 3 4 [/SUP], Robert A Weinstein[SUP] 5 6 [/SUP], Arjun K Venkatesh[SUP] 3 7 [/SUP], Michael Gottlieb[SUP] 8 [/SUP], Ryan Huebinger[SUP] 9 [/SUP], Kristin L Rising[SUP] 10 11 [/SUP], Juan Carlos C Montoy[SUP] 12 [/SUP], Kari A Stephens[SUP] 13 14 [/SUP], Robert M Rodriguez[SUP] 15 [/SUP], Mandy J Hill[SUP] 9 [/SUP], Kelli N O'Laughlin[SUP] 16 17 [/SUP], Nicole L Gentile[SUP] 13 18 19 [/SUP], Ahamed H Idris[SUP] 20 [/SUP], Shu-Xia Li[SUP] 3 [/SUP], Michelle Santangelo[SUP] 8 [/SUP], Efrat R Kean[SUP] 10 [/SUP], Samuel A McDonald[SUP] 20 21 [/SUP], Kristyn Gatling[SUP] 5 [/SUP], Joann G Elmore[SUP] 1 [/SUP]; INSPIRE Group
Collaborators, Affiliations
Importance: Long COVID definitions vary widely, and no consensus exists on how to accurately measure its prevalence, complicating both clinical care and research.
Objective: To assess long COVID prevalence using various definitions from published literature.
Design, setting, and participants: This prospective, multicenter cohort study used data from the longitudinal Innovative Support for Patients With SARS-CoV-2 Infections Registry (INSPIRE). Participants aged 18 years or older with symptoms suggestive of COVID-19 illness at the time of their index SARS-CoV-2 test enrolled at 8 sites across the US from December 11, 2020, through August 29, 2022, with follow-up surveys collected through February 28, 2023.
Exposure: Positive or negative SARS-CoV-2 test result at the time of acute symptoms.
Main outcomes and measures: Long COVID prevalence among INSPIRE participants with a positive vs negative index SARS-CoV-2 test, based on long COVID definitions in published literature. Secondary outcomes were sensitivity and specificity of published definitions compared with self-reported long COVID.
Results: A total of 4575 INSPIRE participants were included (mean [SD] age, 40.40 [14.58] years). Most were female (3013 of 4448 [67.7%]) and aged 18 to 49 years (3338 of 4541 [73.5%]). Applying 5 published definitions for long COVID yielded a prevalence that ranged from 30.84% (95% CI, 29.33%-32.40%) to 42.01% (95% CI, 40.37%-43.66%) at 3 months and 14.23% (95% CI, 13.01%-15.55%) to 21.94% (95% CI, 20.47%-23.47%) at 6 months postinfection; in the 5 comparator studies, reported prevalence of long COVID at 1 to 5 months postinfection ranged from 2.6% (≥84 days) to 47.4% (3-5 months) and at 6 or more months postinfection ranged from 10.0% (95% CI, 8.8%-11.0%) to 61.9% (6-11 months). Using participants' self-reported long COVID as a criterion standard, existing published definitions had low-to-moderate sensitivity (up to 66.32% [95% CI, 62.59%-69.90%] at 3 months and 45.53% [95% CI, 41.51%-49.60%] at 6 months) and high specificity (up to 81.29% [95% CI, 79.32%-83.15%] at 3 months and 94.26% [95% CI, 92.98%-95.37%]) at 6 months.
Conclusions and relevance: In this cohort study, variability in long COVID prevalence across published definitions highlights the need for a standardized, validated definition to improve clinical recognition and research comparability, ultimately guiding more accurate diagnosis and treatment strategies.
. 2025 Aug 1;8(8):e2526506.
doi: 10.1001/jamanetworkopen.2025.26506. Variability in Long COVID Definitions and Validation of Published Prevalence Rates
Lauren E Wisk[SUP] 1 [/SUP], Michelle L'Hommedieu[SUP] 1 [/SUP], Kate Diaz Roldan[SUP] 1 [/SUP], Imtiaz Ebna Mannan[SUP] 2 [/SUP], Erica S Spatz[SUP] 3 4 [/SUP], Robert A Weinstein[SUP] 5 6 [/SUP], Arjun K Venkatesh[SUP] 3 7 [/SUP], Michael Gottlieb[SUP] 8 [/SUP], Ryan Huebinger[SUP] 9 [/SUP], Kristin L Rising[SUP] 10 11 [/SUP], Juan Carlos C Montoy[SUP] 12 [/SUP], Kari A Stephens[SUP] 13 14 [/SUP], Robert M Rodriguez[SUP] 15 [/SUP], Mandy J Hill[SUP] 9 [/SUP], Kelli N O'Laughlin[SUP] 16 17 [/SUP], Nicole L Gentile[SUP] 13 18 19 [/SUP], Ahamed H Idris[SUP] 20 [/SUP], Shu-Xia Li[SUP] 3 [/SUP], Michelle Santangelo[SUP] 8 [/SUP], Efrat R Kean[SUP] 10 [/SUP], Samuel A McDonald[SUP] 20 21 [/SUP], Kristyn Gatling[SUP] 5 [/SUP], Joann G Elmore[SUP] 1 [/SUP]; INSPIRE Group
Collaborators, Affiliations
- PMID: 40794409
- DOI: 10.1001/jamanetworkopen.2025.26506
Importance: Long COVID definitions vary widely, and no consensus exists on how to accurately measure its prevalence, complicating both clinical care and research.
Objective: To assess long COVID prevalence using various definitions from published literature.
Design, setting, and participants: This prospective, multicenter cohort study used data from the longitudinal Innovative Support for Patients With SARS-CoV-2 Infections Registry (INSPIRE). Participants aged 18 years or older with symptoms suggestive of COVID-19 illness at the time of their index SARS-CoV-2 test enrolled at 8 sites across the US from December 11, 2020, through August 29, 2022, with follow-up surveys collected through February 28, 2023.
Exposure: Positive or negative SARS-CoV-2 test result at the time of acute symptoms.
Main outcomes and measures: Long COVID prevalence among INSPIRE participants with a positive vs negative index SARS-CoV-2 test, based on long COVID definitions in published literature. Secondary outcomes were sensitivity and specificity of published definitions compared with self-reported long COVID.
Results: A total of 4575 INSPIRE participants were included (mean [SD] age, 40.40 [14.58] years). Most were female (3013 of 4448 [67.7%]) and aged 18 to 49 years (3338 of 4541 [73.5%]). Applying 5 published definitions for long COVID yielded a prevalence that ranged from 30.84% (95% CI, 29.33%-32.40%) to 42.01% (95% CI, 40.37%-43.66%) at 3 months and 14.23% (95% CI, 13.01%-15.55%) to 21.94% (95% CI, 20.47%-23.47%) at 6 months postinfection; in the 5 comparator studies, reported prevalence of long COVID at 1 to 5 months postinfection ranged from 2.6% (≥84 days) to 47.4% (3-5 months) and at 6 or more months postinfection ranged from 10.0% (95% CI, 8.8%-11.0%) to 61.9% (6-11 months). Using participants' self-reported long COVID as a criterion standard, existing published definitions had low-to-moderate sensitivity (up to 66.32% [95% CI, 62.59%-69.90%] at 3 months and 45.53% [95% CI, 41.51%-49.60%] at 6 months) and high specificity (up to 81.29% [95% CI, 79.32%-83.15%] at 3 months and 94.26% [95% CI, 92.98%-95.37%]) at 6 months.
Conclusions and relevance: In this cohort study, variability in long COVID prevalence across published definitions highlights the need for a standardized, validated definition to improve clinical recognition and research comparability, ultimately guiding more accurate diagnosis and treatment strategies.