CDC Science and the Public Health Approach to Long COVID

Overview

Long COVID is an infection-associated chronic condition that occurs after SARS-CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems. Long COVID affects millions of people across the United States and increases healthcare needs. Health departments play a crucial role in surveillance, communication, and education to increase awareness, reduce stigma, and improve care.

CDC and its partners are conducting research on Long COVID in a variety of populations and settings and are actively working to:

• Disseminate clinical guidance and share epidemiologic and surveillance data to inform public health policy and action.
• Create and increase access to Long COVID educational and communication resources.
• Support clinical capacity by connecting clinicians and public health professionals to Long COVID clinical guidance, resources and educational opportunities.

Key findings

Prevalence

Long COVID estimates vary due to different study criteria, symptoms investigated, patient populations, and timing of when symptoms are assessed. CDC collects and analyzes data through several public health surveys. In 2022, 6.9% of adults and 1.3% of children (roughly 17 million and 1 million, respectively) in the United States ever reported experiencing Long COVID. ^(4-5)

While Long COVID can occur in anyone who gets a SARS-CoV-2 infection, some people or groups of people are at higher risk of developing Long COVID. These include women, people with underlying conditions, people who experienced more severe outcomes of COVID-19, and people of Hispanic ethnicity. ^(4,9,10) Approximately 1 in 4 adults with Long COVID reported experiencing significant limitations in their daily activity. ^(6-8)

Symptoms

More than 200 Long COVID symptoms have been identified. However, fatigue, brain fog, and exhaustion (post-exertional malaise) are among the commonly reported symptoms of Long COVID. ^(11,12)

Prevention

COVID-19 vaccination is the best available tool to reduce the risk of Long COVID. Research shows that COVID-19 vaccination prior to SARS-CoV-2 infection reduces the risk of developing Long COVID among both children and adults. ^(1-3)

Public health approach to Long COVID

Collaboration between federal agencies and public health partners is important to address the serious nature of Long COVID. CDC has identified key areas of support that clinicians and public health professionals need to empower their efforts to address Long COVID.⁽¹³⁾

Surveillance and epidemiology

Using a variety of data sources to better understand and estimate the:

• Incidence and prevalence of Long COVID
• Economic, social, and clinical burden of Long COVID
• Impact of Long COVID in certain populations who are disproportionately affected
• Role of COVID-19 vaccination and other mitigation measures in preventing Long COVID

Communication and public education

Creating and increasing access to educational and communication resources to inform people about:

• Long COVID as a serious infection–associated chronic condition
• Prevention and management of Long COVID
• Connecting individuals to existing resources and support groups to combat stigma and feelings of isolation, and to provide validation

Clinical capacity

Supporting clinician efforts to effectively diagnose and manage Long COVID by:

• Connecting clinicians to continuing education opportunities and webinars focused on Long COVID
• Sharing information and increasing access to clinical resources and guidance for Long COVID

What CDC is doing

CDC continues to collaborate with clinicians, public health partners, and other federal agencies to better understand and address the impacts of Long COVID. CDC supports these goals by:

• Monitoring the burden and impact of Long COVID on various populations through TrackPCC, a study tracking Post-COVID Conditions
• Sharing data and research aimed at better understanding COVID-19 and Long COVID
• Supporting free clinician education through CDC's Clinician Outreach and Communication Activity (COCA) calls

Explore CDC data

CDC's research and data on Long COVID can be accessed through:

Prevalence data can be readily accessed from the National Center for Health Statistics rapid survey systems. Inclusion of data and analyses of Long COVID by race/ethnicity, age, sex, and other factors are a CDC priority.

Resources

Reports

• A Long COVID Definition: A Chronic, Systemic Disease State with Profound Consequences | The National Academies Press
• Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2 Infection | The National Academies Press
• Implementation of the Government-wide Response to Long COVID
• National Research Action Plan
• Services and Supports for Longer-Term Impacts of COVID-19
• Health+ Long Covid Human-Centered Design Report
• Whole-Health-System-Approach-to-Long-COVID_080122_FINAL.pdf
• CSTE-STLT-Long-COVID-Surveillance-August-2023.pdf

Toolkits and additional resources

• Education and Practice-Based Resources | AAFP
• The AHC Health-Related Social Needs Screening Tool
• Long Covid (ca.gov)
• Long COVID (PASC) Resources

Continuing education and webinars

• Long-COVID webinars – Institute for Learning, Education and Development
• Education and Practice-Based Resources | AAFP
• The EveryONE Project™: COVID-19 and Health Equity
• Continuing Education|Clinician Outreach and Communication Activity (COCA)

Echo program

• Public Program | iECHO
• Long-COVID ECHO | College of Health Solutions
• Exploring Clinical Practice and Research

Select CDC publications

Prospective cohort studies

• Gottlieb M, Wang RC, Yu H, Spatz ES, Montoy JCC, Rodriguez RM, Chang AM, Elmore JG, Hannikainen PA, Hill M, Huebinger RM, Idris AH, Lin Z, Koo K, McDonald S, O'Laughlin KN, Plumb ID, Santangelo M, Saydah S, Willis M, Wisk LE, Venkatesh A, Stephens KA, Weinstein RA; Innovative Support for Patients with SARS-CoV-2 Infections Registry (INSPIRE) Group. Severe Fatigue and Persistent Symptoms at 3 Months Following Severe Acute Respiratory Syndrome Coronavirus 2 Infections During the Pre-Delta, Delta, and Omicron Time Periods: A Multicenter Prospective Cohort Study. Clin Infect Dis. 2023 Jun 8;76(11):1930-1941. doi: 1093/cid/ciad045. PMID: 36705268; PMCID: PMC10249989.
• Han JH, Womack KN, Tenforde MW, Files DC, Gibbs KW, Shapiro NI, Prekker ME, Erickson HL, Steingrub JS, Qadir N, Khan A, Hough CL, Johnson NJ, Ely EW, Rice TW, Casey JD, Lindsell CJ, Gong MN, Srinivasan V, Lewis NM, Patel MM, Self WH; Influenza and Other Viruses in the Acutely Ill (IVY) Network. Associations between persistent symptoms after mild COVID-19 and long-term health status, quality of life, and psychological distress. Influenza Other Respir Viruses. 2022 Mar 28.
• O'Laughlin KN, Thompson M, Hota B, Gottlieb M, Plumb ID, Chang AM, Wisk LE, Hall AJ, Wang RC, Spatz ES, Stephens KA, Huebinger RM, McDonald SA, Venkatesh A, Gentile N, Slovis BH, Hill M, Saydah S, Idris AH, Rodriguez R, Krumholz HM, Elmore JG, Weinstein RA, Nichol G; INSPIRE Investigators. Study protocol for the Innovative Support for Patients with SARS-COV-2 Infections Registry (INSPIRE): A longitudinal study of the medium and long-term sequelae of SARS-CoV-2 infection. PLoS One. 2022 Mar 3;17(3).
• Vu QM, Fitzpatrick AL, Cope JR, et al. Estimates of Incidence and Predictors of Fatiguing Illness after SARS-CoV-2 Infection. Emerging Infectious Diseases. 2024;30(3):539-547. doi:3201/eid3003.231194.

Analysis of electronic healthcare data

• Barrett CE, Koyama AK, Alvarez P, Chow W, Lundeen EA, Perrine CG, Pavkov ME, Rolka DB, Wiltz JL, Bull-Otterson L, Gray S, Boehmer TK, Gundlapalli AV, Siegel DA, Kompaniyets L, Goodman AB, Mahon BE, Tauxe RV, Remley K, Saydah S. Risk for Newly Diagnosed Diabetes >30 Days After SARS-CoV-2 Infection Among Persons Aged <18 Years – United States, March 1, 2020-June 28, 2021. MMWR Morb Mortal Wkly Rep. 2022 Jan 14;71(2):59-65.
• Hernandez-Romieu AC, Carton TW, Saydah S, Azziz-Baumgartner E, Boehmer TK, Garret NY, Bailey LC, Cowell LG, Draper C, Mayer KH, Nagavedu K, Puro JE, Rasmussen SA, Trick WE, Wanga V, Chevinsky JR, Jackson BR, Goodman AB, Cope JR, Gundlapalli AV, Block JP. Prevalence of Select New Symptoms and Conditions Among Persons Aged Younger Than 20 Years and 20 Years or Older at 31 to 150 Days After Testing Positive or Negative for SARS-CoV-2. JAMA Netw Open. 2022 Feb 1;5(2).
• Kompaniyets L, Bull-Otterson L, Boehmer TK, et al. Post–COVID-19 Symptoms and Conditions Among Children and Adolescents — United States, March 1, 2020–January 31, 2022. MMWR Morb Mortal Wkly Rep 2022;71:993–999. DOI: http://dx.doi.org/10.15585/mmwr.mm7131a3.
• Malden, D.E., Liu, IL.A., Qian, L. et al.Post-COVID conditions following COVID-19 vaccination: a retrospective matched cohort study of patients with SARS-CoV-2 infection. Nat Commun 15, 4101 (2024). DOI: https://doi.org/10.1038/s41467-024-48022-9.

Health surveys

• Feldstein LR, Edwards D, Cope JR, Hagen MB, Saydah S. Differences in Report of Post-COVID Conditions Among Adults Tested for SARS-CoV-2 by Race and Ethnicity: 2022 Porter Novelli SummerStyles Survey, U.S. AJPM Focus. 2023 Dec 27;3(2):100181. doi: 1016/j.focus.2023.100181. PMID: 38371340; PMCID: PMC10869300.
• Nicole D. Ford, PhD; Douglas Slaughter, MPH; Deja Edwards, MPH; Alexandra Dalton, PhD; Cria Perrine, PhD; Anjel Vahratian, PhD; Sharon Saydah, PhD. CDC Morbidity and Mortality Weekly (MMWR), Aug. 11, 2023. Long COVID and Significant Activity Limitation Among Adults, by Age — United States, June 1–13, 2022, to June 7–19, 2023

Commentary

• Saydah SH, Brooks JT, Jackson BR. Surveillance for Post-COVID Conditions Is Necessary: Addressing the Challenges with Multiple Approaches. J Gen Intern Med. 2022 Feb 15:1–3.

Models of care

• Godino JG, Samaniego JC, Sharp SP, Taren D, Zuber A, Armistad AJ, Dezan AM, Leyba AJ, Friedly JL, Bunnell AE, Matthews E, Miller MJ, Unger ER, Bertolli J, Hinckley A, Lin JS, Scott JD, Struminger BB, Ramers C. A technology-enabled multi-disciplinary team-based care model for the management of Long COVID and other fatiguing illnesses within a federally qualified health center: protocol for a two-arm, single-blind, pragmatic, quality improvement professional cluster randomized controlled trial. Trials. 2023 Aug 12;24(1):524. doi: 1186/s13063-023-07550-3. PMID: 37573421; PMCID: PMC10423413.