Long COVID
Examining Long-Term Health Effects of
COVID-19 and Implications for the Social
Security Administration
_____
Laura Aiuppa Denning and Erin Hammers
Forstag, Rapporteurs
Board on Health Care Services
Health and Medicine Division
Proceedings of a Workshop
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by contracts between the National Academy of Sciences and the 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: 978-0-309-69035-5
International Standard Book Number-10: 0-309-69035-8
Digital Object Identifier: https://doi.org/10.17226/26619
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2022. Long COVID: Examining long-term health effects of COVID-19 and implications for the Social Security Administration: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26619.
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PLANNING COMMITTEE ON LONG-TERM HEALTH EFFECTS STEMMING FROM COVID-19 AND IMPLICATIONS FOR THE SOCIAL SECURITY ADMINISTRATION
WALTER R. FRONTERA (Chair), Professor, Department of Physical Medicine, Rehabilitation and Sports Medicine and Department of Physiology, University of Puerto Rico School of Medicine
ADAORA A. ADIMORA, Sarah Graham Kenan Distinguished Professor of Medicine, Division of Infectious Diseases, University of North Carolina School of Medicine
RANY CONDOS, Clinical Professor, Department of Medicine, New York University Grossman School of Medicine; Director, Post-COVID Program and Adult Cystic Fibrosis Program, NYU Langone Health
STEVEN G. DEEKS, Professor of Medicine in Residence, University of California, San Francisco School of Medicine
ANDREA M. LERNER, Medical Officer, Office of the Director, National Institute of Allergy and Infectious Diseases, National Institutes of Health
MANSOOR A. MALIK, Clinical Professor, Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine
LAURA A. MALONE, Physician Scientist, Center for Movement Studies, Kennedy Krieger Institute; Co-director, Pediatric Post–COVID-19 Rehabilitation Clinic, Kennedy Krieger Institute; Assistant Professor, Department of Neurology and Department of Physical Medicine and Rehabilitation, Johns Hopkins University School of Medicine
AVINDRA NATH, Senior Investigator and Clinical Director, Section of Infections of the Nervous System, National Institute of Neurological Disorders and Stroke, National Institutes of Health
MONICA VERDUZCO-GUTIERREZ, Professor and Chair, Department of Rehabilitation Medicine, Joe R. and Teresa Lozano Long School of Medicine, University of Texas Health, San Antonio
Health and Medicine Division Staff
LAURA AIUPPA DENNING, Senior Program Officer
VICTORIA BROWN, Senior Program Assistant
SHARYL NASS, Senior Director, Board on Health Care Services
Consultant
ERIN HAMMERS FORSTAG, Consulting Writer
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Reviewers
This Proceedings of a Workshop 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 proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.
We thank the following individuals for their review of this proceedings:
LIDA BENINSON, National Academies of Sciences, Engineering, and Medicine
SARAH RUIZ, Patient-Centered Outcomes Research Institute
LAURA TABACOF, Icahn School of Medicine at Mount Sinai
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by ALAN M. JETTE, MGH Institute of Health Professions. He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies. We also thank staff member Lida Beninson for reading and providing helpful comments on this manuscript.
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Acknowledgments
The National Academies of Sciences, Engineering, and Medicine’s Board on Health Care Services wishes to express its sincere gratitude to the planning committee chair, Walter Frontera, for his valuable contributions to the development and orchestration of this workshop. The board also wishes to thank all the members of the planning committee, who collaborated to ensure a workshop replete with informative presentations and moderated rich discussions. Finally, the board wants to thank the speakers, who generously shared their expertise and their time with workshop participants. Funding from the Social Security Administration made this workshop possible.
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Contents
Overview of SSA Disability Evaluation
2 OVERVIEW OF LONG COVID AND DISABILITY
Impact of COVID-19 on the Workforce
3 POSTACUTE SEQUELAE OF SARS-COV-2 INFECTION AND IMPLICATIONS FOR RECOVERY
Neurological and Neuromuscular Sequelae
Cardiovascular Sequelae and Autonomic Syndrome
4 PATIENT AND CAREGIVER PERSPECTIVES ON LIVING WITH LONG COVID
5 LONG-TERM IMPAIRMENTS AND FUNCTIONAL LIMITATIONS RELATED TO LONG COVID
Physical Function, Cognitive Function, and Health-Related Quality of Life
Limitations and Impairments after a Stay in the Intensive Care Unit
Child and Adolescent Functioning
ClinFIT COVID-19: A Novel Tool to Assess Functioning
6 CLINICAL PRACTICES AND SYSTEM APPROACHES FOR IMPROVING HEALTH AND RECOVERY FROM LONG COVID
Integrated Care Model: Adult Population
Integrated Care Model: Pediatric Population
Overcoming Barriers to Health and Social Inequities
7 EXPLORING FUTURE DIRECTIONS IN THE TREATMENT OF LONG COVID
C Biographical Sketches of Workshop Planning Committee Members and Speakers
Boxes, Figures, and Tables
BOXES
1-2 Key Points by Individual Speakers and Participants
FIGURES
2-1 Natural history of SARS-CoV-2 infection
2-2 Body systems affected by SARS-CoV-2 infection
2-4 Duration of Long COVID among community mild/moderate COVID cases
2-5 Duration of Long COVID among hospitalized COVID cases
2-6 Share of a sector in total loss in employment
2-7 Number of people ages 16 and older with a disability, in thousands
2-8 Percentage of population ages 16 and older that is employed
5-1 Full time employment pre- and post-COVID-19
5-2 Neuro QOL Cognitive Function scale scores among patients with postacute COVID-19 infection
5-4 Employment status among patients with postacute COVID-19 infection
6-1 Specialties available during the initial patient visit in post-COVID clinics
6-2 Algorithm used at Penn Medicine post-COVID clinic for providing care to Long COVID patients
6-3 Characteristics associated with COVID-19 and Long COVID
TABLES
2-1 Probability of Ongoing Symptoms at 3, 6, and 12 Months after Acute COVID-19
Abbreviations
AAPM&R | American Academy of Physical Medicine and Rehabilitation |
ARDS | acute respiratory distress syndrome |
CDC | Centers for Disease Control and Prevention |
CDR | continuing disability review |
ClinFIT | Clinical Functioning Information Tool |
GBD | Global Burden of Disease |
ICF | International Classification of Functioning, Disability, and Health |
IHME | Institute for Health Metrics and Evaluation |
MCAS | mast cell activation syndrome |
ME/CFS | myalgic encephalomyelitis/chronic fatigue syndrome |
MERS | Middle East respiratory syndrome |
MIS-C | multisystem inflammatory syndrome in children |
NICE | National Institute for Health and Care Excellence |
NIH | National Institutes of Health |
PASC | postacute sequelae of COVID-19 |
PICS | postintensive care syndrome |
PM&R | physical medicine and rehabilitation |
POTS | postural orthostatic tachycardia syndrome |
RECOVER | Researching COVID to Enhance Recovery |
SARS | severe acute respiratory syndrome |
SSA | Social Security Administration |
SSDI | Social Security Disability Insurance Program |
SSRI | selective serotonin reuptake inhibitor |
WHO | World Health Organization |