TY - JOUR
T1 - Characterizing long COVID in an international cohort
T2 - 7 months of symptoms and their impact
AU - Davis, Hannah E.
AU - Assaf, Gina S.
AU - McCorkell, Lisa
AU - Wei, Hannah
AU - Low, Ryan J.
AU - Re'em, Yochai
AU - Redfield, Signe
AU - Austin, Jared P.
AU - Akrami, Athena
N1 - Funding Information:
All authors contributed voluntarily to this work. The cost of survey hosting (on Qualtrics) and publication fee was covered by AA's research grant ( Wellcome Trust /Gatsby Charity via Sainsbury Wellcome center, UCL).
Funding Information:
We would like to thank the admin team at Body Politic COVID-19 Slack Support Group. We owe our success to their support in distributing the survey, connecting us with each other and to volunteers. We would like to thank all respondents for their efforts in contributing to the study and providing feedback. In particular, we would like to thank Rachel Robles for her assistance in data cleaning, Monique Jackson for illustrations, Jared Mercier for IT support. We would like to thank our translators: Oksana Zinchenko (Russian); Emeline Chavernac (French); Maarten Steenhagen and Red Team C19 NL Community (Dutch); Luisa Pereira, Lucía Landa, Maria Teresa Cabañero, Daniel Hernandez Diaz, Brenda Valderrama, and Lorena Ramírez-Nícoles (Spanish); Liliana Vagnoni (Italian); Victor Pedrosa, Monica Malta, and Noris Kern (Portugues); Juno Simorangkir (Indonesian); and Rawan Alsubaie, Sarah Mitkees, Mohamed Abdelhack, Dalia Aroury, Luna Aroury, and Ihsan Kaadan (Arabic). We would also like to acknowledge Dr. Alka Gupta of WCMC for her guidance and involvement in the ethics approval process. Finally, we thank the Long COVID community and allies in the ME/CFS community for their knowledge and support in patient-driven research. AA, GSA, HED, LM, YR, and HW conceived the project and designed the survey. HED accessed and cleaned the raw data. AA, GSA, HED, RJL, and LM analyzed the quantitative data. AA and RJL performed the statistical analyses. HED, LM, and HW analyzed the qualitative data. AA and RJL created the figures. HW and AA created the tables. JPA and YR provided medical input. AA, GSA, HED, RJL, LM, SR, YR, and HW wrote the manuscript, with extensive comments from JPA. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted. AA, GSA, HED, RJL, LM, YR, and HW contributed equally to this work. AA is the Principal Investigator and guarantor. The corresponding author (AA) affirms that the manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned have been explained. All authors contributed voluntarily to this work. The cost of survey hosting (on Qualtrics) and publication fee was covered by AA's research grant (Wellcome Trust/Gatsby Charity via Sainsbury Wellcome center, UCL). The data collected for this study, including anonymized individual patient data and a data dictionary defining each field in the data set will be made publicly available. Interested parties can contact the corresponding author (AA).
Publisher Copyright:
© 2021 The Authors
PY - 2021/8
Y1 - 2021/8
N2 - Background: A significant number of patients with COVID-19 experience prolonged symptoms, known as Long COVID. Few systematic studies have investigated this population, particularly in outpatient settings. Hence, relatively little is known about symptom makeup and severity, expected clinical course, impact on daily functioning, and return to baseline health. Methods: We conducted an online survey of people with suspected and confirmed COVID-19, distributed via COVID-19 support groups (e.g. Body Politic, Long COVID Support Group, Long Haul COVID Fighters) and social media (e.g. Twitter, Facebook). Data were collected from September 6, 2020 to November 25, 2020. We analyzed responses from 3762 participants with confirmed (diagnostic/antibody positive; 1020) or suspected (diagnostic/antibody negative or untested; 2742) COVID-19, from 56 countries, with illness lasting over 28 days and onset prior to June 2020. We estimated the prevalence of 203 symptoms in 10 organ systems and traced 66 symptoms over seven months. We measured the impact on life, work, and return to baseline health. Findings: For the majority of respondents (>91%), the time to recovery exceeded 35 weeks. During their illness, participants experienced an average of 55.9+/- 25.5 (mean+/-STD) symptoms, across an average of 9.1 organ systems. The most frequent symptoms after month 6 were fatigue, post-exertional malaise, and cognitive dysfunction. Symptoms varied in their prevalence over time, and we identified three symptom clusters, each with a characteristic temporal profile. 85.9% of participants (95% CI, 84.8% to 87.0%) experienced relapses, primarily triggered by exercise, physical or mental activity, and stress. 86.7% (85.6% to 92.5%) of unrecovered respondents were experiencing fatigue at the time of survey, compared to 44.7% (38.5% to 50.5%) of recovered respondents. 1700 respondents (45.2%) required a reduced work schedule compared to pre-illness, and an additional 839 (22.3%) were not working at the time of survey due to illness. Cognitive dysfunction or memory issues were common across all age groups (~88%). Except for loss of smell and taste, the prevalence and trajectory of all symptoms were similar between groups with confirmed and suspected COVID-19. Interpretation: Patients with Long COVID report prolonged, multisystem involvement and significant disability. By seven months, many patients have not yet recovered (mainly from systemic and neurological/cognitive symptoms), have not returned to previous levels of work, and continue to experience significant symptom burden. Funding: All authors contributed to this work in a voluntary capacity. The cost of survey hosting (on Qualtrics) and publication fee was covered by AA's research grant (Wellcome Trust/Gatsby Charity via Sainsbury Wellcome center, UCL).
AB - Background: A significant number of patients with COVID-19 experience prolonged symptoms, known as Long COVID. Few systematic studies have investigated this population, particularly in outpatient settings. Hence, relatively little is known about symptom makeup and severity, expected clinical course, impact on daily functioning, and return to baseline health. Methods: We conducted an online survey of people with suspected and confirmed COVID-19, distributed via COVID-19 support groups (e.g. Body Politic, Long COVID Support Group, Long Haul COVID Fighters) and social media (e.g. Twitter, Facebook). Data were collected from September 6, 2020 to November 25, 2020. We analyzed responses from 3762 participants with confirmed (diagnostic/antibody positive; 1020) or suspected (diagnostic/antibody negative or untested; 2742) COVID-19, from 56 countries, with illness lasting over 28 days and onset prior to June 2020. We estimated the prevalence of 203 symptoms in 10 organ systems and traced 66 symptoms over seven months. We measured the impact on life, work, and return to baseline health. Findings: For the majority of respondents (>91%), the time to recovery exceeded 35 weeks. During their illness, participants experienced an average of 55.9+/- 25.5 (mean+/-STD) symptoms, across an average of 9.1 organ systems. The most frequent symptoms after month 6 were fatigue, post-exertional malaise, and cognitive dysfunction. Symptoms varied in their prevalence over time, and we identified three symptom clusters, each with a characteristic temporal profile. 85.9% of participants (95% CI, 84.8% to 87.0%) experienced relapses, primarily triggered by exercise, physical or mental activity, and stress. 86.7% (85.6% to 92.5%) of unrecovered respondents were experiencing fatigue at the time of survey, compared to 44.7% (38.5% to 50.5%) of recovered respondents. 1700 respondents (45.2%) required a reduced work schedule compared to pre-illness, and an additional 839 (22.3%) were not working at the time of survey due to illness. Cognitive dysfunction or memory issues were common across all age groups (~88%). Except for loss of smell and taste, the prevalence and trajectory of all symptoms were similar between groups with confirmed and suspected COVID-19. Interpretation: Patients with Long COVID report prolonged, multisystem involvement and significant disability. By seven months, many patients have not yet recovered (mainly from systemic and neurological/cognitive symptoms), have not returned to previous levels of work, and continue to experience significant symptom burden. Funding: All authors contributed to this work in a voluntary capacity. The cost of survey hosting (on Qualtrics) and publication fee was covered by AA's research grant (Wellcome Trust/Gatsby Charity via Sainsbury Wellcome center, UCL).
KW - COVID recovery
KW - COVID-19
KW - COVID-19 symptoms
KW - Long COVID
KW - Long Hauler
KW - PASC
KW - Patient-Led research
KW - Post Acute COVID
KW - Post-COVID-19 Syndrome
KW - Post-acute Sequelae of COVID-19
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U2 - 10.1016/j.eclinm.2021.101019
DO - 10.1016/j.eclinm.2021.101019
M3 - Article
AN - SCOPUS:85122728587
VL - 38
JO - EClinicalMedicine
JF - EClinicalMedicine
SN - 2589-5370
M1 - 101019
ER -