Consensus Study Report

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This activity was supported by Contract No. 28321318D00060015 between the National Academy of Sciences and U.S. Social Security Administration. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

International Standard Book Number-13: 978-0-309-71860-8
International Standard Book Number-10: 0-309-71860-0
Digital Object Identifier: https://doi.org/10.17226/27756
Library of Congress Control Number: 2024939460

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. Long-term health effects of COVID-19: Disability and function following SARS-CoV-2 infection. Washington, DC: The National Academies Press. https://doi.org/10.17226/27756.

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COMMITTEE ON THE LONG-TERM HEALTH EFFECTS STEMMING FROM COVID-19 AND IMPLICATIONS FOR THE SOCIAL SECURITY ADMINISTRATION

PAUL A. VOLBERDING (Chair), Professor of Medicine Emeritus, University of California, San Francisco

ZIYAD AL-ALY, Director, Clinical Epidemiology Center, Chief of Research and Development Service, VA Saint Louis Health Care System

JACQUELINE BECKER, Assistant Professor, Clinical Neuropsychologist, Division of General Internal Medicine, Icahn School of Medicine at Mount Sinai

ALFRED O. BERG, Professor and Chair Emeritus, Department of Family Medicine, University of Washington, Seattle

ANDREW B. BINDMAN, Executive Vice President and Chief Medical Officer, Kaiser Permanente

ALUKO A. HOPE, Associate Professor, Department of Medicine, Oregon Health & Science University

LEORA I. HORWITZ, Director, Center for Healthcare Innovation and Delivery Science, NYU Langone Health

CLARION E. JOHNSON, Former Global Medical Director, ExxonMobil

BARBARA L. KORNBLAU, Retired Professor and Director, Occupational Therapy Program, Idaho State University

JOAO PEDRO MATIAS LOPES, Assistant Professor, Case Western Reserve University

LAURA A. MALONE, Assistant Professor, Kennedy Krieger Institute and Johns Hopkins School of Medicine, Departments of Neurology and Physical Medicine and Rehabilitation

LOUISE ELAINE VAZ, Associate Professor of Pediatrics, Department of Infectious Disease, Oregon Health & Science University

MONICA VERDUZCO-GUTIERREZ, Chair and Professor, Department of Rehabilitation Medicine, Long School of Medicine, University of Texas Health Science Center at San Antonio

SARAH WULF HANSON, Lead Research Scientist of Global Health Metrics, Institute for Health Metrics and Evaluation, University of Washington

Study Staff

CAROL MASON SPICER, Senior Program Officer/Study Director

BERNICE CHU, Program Officer

ELIZABETH FERRÉ, Research Associate

BURGESS MANOBAH, Research Associate

VIOLET BISHOP, Research Assistant

JOSEPH GOODMAN, Senior Program Assistant

SHARYL NASS, Senior Board Director, Board on Health Care Services

Reviewers

This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.

We thank the following individuals for their review of this report:

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by ROBERT S. LAWRENCE, Johns Hopkins Bloomberg School of Public Health, and ERIC B. LARSON, University of Washington School of Public Health. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.

Contents

SUMMARY

Context for This Study

Study Charge and Scope

Study Approach and Scope

The Committee’s Conclusions

1 INTRODUCTION

Context for This Study

Study Charge and Scope

Study Approach

Terminology and Definitions

Health Equity

Report Organization

References

2 DIAGNOSIS OF SARS-CoV-2 INFECTION

Viral Testing

Before Viral Diagnostic Testing

Establishing a History of Prior COVID-19

Diagnosis of Long COVID

Summary and Conclusions

References

3 SELECTED LONG-TERM HEALTH EFFECTS STEMMING FROM COVID-19 AND FUNCTIONAL IMPLICATIONS

Overview of Health Effects Associated with Long COVID

Selected Multisystem Health Effects Associated with Long COVID

Health Effects of Long COVID in Children and Adolescents

Selected Guidance Statements Specific to Long COVID

Overview of Body Systems Potentially Affected in Long COVID

Summary and Conclusions

References

4 GLOBAL FUNCTIONING IN LONG COVID

Long-Term Functional Outcomes in Patients Not Hospitalized for COVID-19

Long-Term Functional Outcomes in Patients Hospitalized for COVID-19

Long-Term Functional Outcomes in Patients Receiving Intensive Care for COVID-19

Long-Term Functional Outcomes in Children and Adolescents with COVID-19

Long-Term Functional Outcomes in Other Selected Populations with COVID-19

Effects of Rehabilitation on Functional Trajectories in Individuals with Long COVID

Assessing Global Functioning

Summary and Conclusions

References

5 CHRONIC CONDITIONS SIMILAR TO LONG COVID

Case Definitions and Epidemiology

Shared Symptoms and Functional Implications

Common Mechanisms of Action

Prognosis and Progression

Treatment and Management

Summary and Conclusions

References

6 OVERALL CONCLUSIONS

Diagnosis of Long COVID

Epidemiology

Health Effects

Functional Impact and Risk of Factors

Long COVID in Children and Adolescents

Disease Management

Disease Course and Prognosis

Health Equity

Similar Chronic Conditions

APPENDIXES

A Public Meeting Agendas

B Literature Search Strategies

C Biographical Sketches of Committee Members

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Boxes, Figures, and Tables

BOXES

S-1 Statement of Task

1-1 Statement of Task

FIGURES

1-1 International Classification of Functioning, Disability and Health framework

1-2 Social Security Administration’s adjudication process for adults

1-3 Social Security Administration’s adjudication process for children

3-1 Lasting impact of COVID-19

5-1 36-Item Short Form Survey (SF-36) and World Health Organization Disability Assessment Schedule (WHODAS) scores among ME/CFS, Long COVID, and control populations

TABLES

3-1 Research on Clusters of Long COVID Health Effects

3-2 Common Long COVID Symptoms in Children and Adolescents by Body System

3-3 Selected Guidance Statements on Long COVID

4-1 Types of Rehabilitation Programs Used in Long COVID Recovery

4-2 Global Functioning Associated with Long COVID

5-1 Overlap in Common Symptoms among Long COVID, ME/CFS, and Fibromyalgia

5-2 Summary of Potential Biologic Mechanisms of Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and Fibromyalgia (FM)

ANNEX TABLES

Annex Table 1-1 Terminology and Definitions for “Long COVID”

Annex Table 3-1 Selected Respiratory Conditions Associated with Long COVID

Annex Table 3-2 Selected Cardiovascular Conditions Associated with Long COVID

Annex Table 3-3 Selected Neurological Conditions Associated with Long COVID

Annex Table 3-4 Selected Special Senses and Speech Conditions Associated with Long COVID

Annex Table 3-5 Selected Musculoskeletal Conditions Associated with Long COVID

Annex Table 3-6 Selected Endocrine Conditions Associated with Long COVID

Annex Table 3-7 Selected Immune Conditions Associated with Long COVID

Annex Table 3-8 Selected Gastrointestinal Conditions Associated with Long COVID

Annex Table 3-9 Selected Genitourinary Conditions Associated with Long COVID

Annex Table 3-10 Selected Skin Conditions Associated with Long COVID

Annex Table 3-11 Selected Neuropsychiatric Conditions Associated with Long COVID

Annex Table 3-12 Multisystem Conditions Associated with Long COVID

Annex Table 3-13 Physical Activities; Vision, Hearing, and Speech; and Mental Activities

Preface

Infection with SARS-CoV-2 can trigger health effects that can continue well after resolution of the initial COVID-19 illness. These effects have protean manifestations, often involving numerous organ systems, that can persist for months or years and may, in some cases, be disabling. Children and adolescents are affected as well as adults. While most aspects of these conditions are poorly understood, concern is real that they may result in an increase in applications for disability received by the Social Security Administration (SSA). Accordingly, SSA commissioned a consensus report from the National Academies of Sciences, Engineering, and Medicine reviewing the long-term health effects of COVID-19 and potential implications for SSA disability. To this end, the National Academies convened an ad hoc committee of experts to provide an overview of this persisting clinical condition, its effects and natural history in a variety of affected populations, and the current status of treatment and management and of ongoing research efforts. The committee was also charged with reviewing the spectrum of health effects associated with this new condition and their impact on function in both adults and children.

Given that the long-term health effects of COVID-19 are complex and that knowledge of those effects is rapidly evolving, the committee convened by the National Academies included experts in the epidemiology, diagnosis, and clinical management of what has come to be called Long COVID. This committee, including researchers and clinicians, some themselves affected, collected evidence, heard presentations from invited speakers, and deliberated in response to a statement of task from SSA.

This consensus report was prepared with a sense of urgency in light of the rapid evolution of knowledge about the diagnosis of SARS-CoV-2 infection and the long-term health effects and disordered function that may follow COVID-19, against the backdrop of what has been learned about other complex chronic conditions, such as myalgic encephalitis/chronic fatigue syndrome and fibromyalgia, themselves potentially triggered by infections. The committee identified ways in which the diagnosis and management of Long COVID represent unique challenges and raise many remaining questions for the SSA disability program. The committee and I are grateful for the opportunity to point out that the symptoms experienced by these patients are real and should be taken seriously.

The committee extends its sincere thanks to the many individuals who shared their time and expertise to support its work and inform its deliberations. The study was sponsored by SSA, and we thank Brendan Rogak, Vincent Nibali, Megan Butson, and Steve Rollins for their guidance and support. The committee acknowledges Vincent Nibali at SSA for verifying the accuracy of relevant technical content pertaining to the disability determination process. The committee also benefited greatly from discussions with individuals who presented at the committee’s open sessions: Karin Denault, Lucas Denault, Robert Holman, Akiko Iwasaki, Anthony Komaroff, Avindra Nath, Vincent Nibali, David Putrino, Steve Rollins, Eric Van Gieson, Angela Meriquez Vázquez, and Alexandra Yonts. In addition, the committee’s work benefited from presentations during two concurrent National Academies activities: Symposium on Long COVID: Examining the Working Definition (June 2023), hosted by the Committee on Examining the Working Definition for Long COVID, and Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors (June 2023), hosted by the Forum on Microbial Threats and the Forum on Neuroscience and Nervous System Disorders. Appreciation goes as well to Sonya Marshall-Gradisnik and Natalie Eaton-Fitch for their work on a paper commissioned by the committee to review chronic conditions similar to Long COVID.

The committee thanks the reviewers of this report for their invaluable feedback on an earlier draft and the monitor and coordinator who oversaw the report review.

The committee also acknowledges the many staff within the Health and Medicine Division (HMD) who provided support in various ways to this project, including Carol Mason Spicer (study director), Bernice Chu (program officer), Elizabeth Ferré (research associate), Violet Bishop (research assistant), Burgess Manobah (research associate), Joe Goodman (senior program assistant), Karen Helsing (senior program officer), and Hoda Soltani (former program officer). The committee extends great thanks and

appreciation to Sharyl Nass, senior director, Board on Health Care Services, who oversaw the project. Greysi Patton (finance business partner), Arzoo Tayyeb (finance business partner), Julie Wiltshire (senior finance business partner), and Ron Brown (deputy director, HMD program finance) oversaw finances for the project; Rebecca Morgan (senior research librarian) provided research assistance, and Anne Marie Houppert (senior librarian) assisted with fact checking; and the report review, production, and communications staff all provided valuable guidance to ensure the success of the final product. Rona Briere and her staff provided superb editorial assistance in preparing the final report.

Paul A. Volberding, Chair
Committee on the Long-Term Health Effects Stemming from COVID-19 and Implications for the Social Security Administration

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Acronyms and Abbreviations

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