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Recovery from COVID-19: a sprint or marathon? 6 months follow-up data of online long COVID-19 support group members

Anouk W. Vaes, Yvonne M.J. Goërtz, Maarten Van Herck, Felipe V. C. Machado, Roy Meys, Jeannet M. Delbressine, Sarah Houben-Wilke, Swetlana Gaffron, Dieter Maier, Chris Burtin, Rein Posthuma, Nicole P. H. van Loon, Frits M. E. Franssen, Bita Hajian, Sami O. Simons, Job F. M. van Boven, Frederikus A. Klok, Bart Spaetgens, Claire M.H. Pinxt, Limmie Y.L. Liu, Geertjan Wesseling, Yvonne Spies, Herman Vijlbrief, Alex J. van't Hul, Daisy J.A. Janssen, Martijn A. Spruit
ERJ Open Research 2021; DOI: 10.1183/23120541.00141-2021
Anouk W. Vaes
1Department of Research and Development, Ciro, Horn, the Netherlands
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  • For correspondence: anoukvaes@ciro-horn.nl
Yvonne M.J. Goërtz
1Department of Research and Development, Ciro, Horn, the Netherlands
2Nutrim School of Nutrition and Translational Research in Metabolism, Maastricht, the Netherlands
3Department of Respiratory Medicine, Maastricht University Medical Centre (MUMC+), Maastricht, the Netherlands
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Maarten Van Herck
1Department of Research and Development, Ciro, Horn, the Netherlands
2Nutrim School of Nutrition and Translational Research in Metabolism, Maastricht, the Netherlands
3Department of Respiratory Medicine, Maastricht University Medical Centre (MUMC+), Maastricht, the Netherlands
4REVAL – Rehabilitation Research Center, BIOMED – Biomedical Research Institute, Faculty of Rehabilitation Sciences, Hasselt University, Diepenbeek, Belgium
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Felipe V. C. Machado
1Department of Research and Development, Ciro, Horn, the Netherlands
2Nutrim School of Nutrition and Translational Research in Metabolism, Maastricht, the Netherlands
3Department of Respiratory Medicine, Maastricht University Medical Centre (MUMC+), Maastricht, the Netherlands
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Roy Meys
1Department of Research and Development, Ciro, Horn, the Netherlands
2Nutrim School of Nutrition and Translational Research in Metabolism, Maastricht, the Netherlands
3Department of Respiratory Medicine, Maastricht University Medical Centre (MUMC+), Maastricht, the Netherlands
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Jeannet M. Delbressine
1Department of Research and Development, Ciro, Horn, the Netherlands
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Sarah Houben-Wilke
1Department of Research and Development, Ciro, Horn, the Netherlands
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Swetlana Gaffron
5Viscovery Software GmbH, Vienna, Austria
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Dieter Maier
6Biomax Informatics AG, Planegg, Germany
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Chris Burtin
4REVAL – Rehabilitation Research Center, BIOMED – Biomedical Research Institute, Faculty of Rehabilitation Sciences, Hasselt University, Diepenbeek, Belgium
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Rein Posthuma
1Department of Research and Development, Ciro, Horn, the Netherlands
2Nutrim School of Nutrition and Translational Research in Metabolism, Maastricht, the Netherlands
3Department of Respiratory Medicine, Maastricht University Medical Centre (MUMC+), Maastricht, the Netherlands
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Nicole P. H. van Loon
1Department of Research and Development, Ciro, Horn, the Netherlands
7Department of Internal Medicine, Maastricht University Medical Center (MUMC+), Maastricht, The Netherlands
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Frits M. E. Franssen
1Department of Research and Development, Ciro, Horn, the Netherlands
2Nutrim School of Nutrition and Translational Research in Metabolism, Maastricht, the Netherlands
3Department of Respiratory Medicine, Maastricht University Medical Centre (MUMC+), Maastricht, the Netherlands
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Bita Hajian
1Department of Research and Development, Ciro, Horn, the Netherlands
2Nutrim School of Nutrition and Translational Research in Metabolism, Maastricht, the Netherlands
3Department of Respiratory Medicine, Maastricht University Medical Centre (MUMC+), Maastricht, the Netherlands
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Sami O. Simons
2Nutrim School of Nutrition and Translational Research in Metabolism, Maastricht, the Netherlands
3Department of Respiratory Medicine, Maastricht University Medical Centre (MUMC+), Maastricht, the Netherlands
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Job F. M. van Boven
8Department of Clinical Pharmacy & Pharmacology, Groningen Research Institute for Asthma and COPD (GRIAC), University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
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Frederikus A. Klok
9Department of Medicine – Thrombosis and Hemostasis, Leiden University Medical Center, Leiden, the Netherlands
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Bart Spaetgens
7Department of Internal Medicine, Maastricht University Medical Center (MUMC+), Maastricht, The Netherlands
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Claire M.H. Pinxt
7Department of Internal Medicine, Maastricht University Medical Center (MUMC+), Maastricht, The Netherlands
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Limmie Y.L. Liu
7Department of Internal Medicine, Maastricht University Medical Center (MUMC+), Maastricht, The Netherlands
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Geertjan Wesseling
2Nutrim School of Nutrition and Translational Research in Metabolism, Maastricht, the Netherlands
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Yvonne Spies
10Lung Foundation Netherlands, Amersfoort, the Netherlands
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Herman Vijlbrief
10Lung Foundation Netherlands, Amersfoort, the Netherlands
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Alex J. van't Hul
11Department of Pulmonary Disease, Radboud University Medical Center, Nijmegen, the Netherlands
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Daisy J.A. Janssen
1Department of Research and Development, Ciro, Horn, the Netherlands
12Department of Health Services Research, Care and Public Health Research Institute, Faculty of Health, Medicine and Life Sciences, 6229 ER Maastricht University, Maastricht, the Netherlands
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Martijn A. Spruit
1Department of Research and Development, Ciro, Horn, the Netherlands
2Nutrim School of Nutrition and Translational Research in Metabolism, Maastricht, the Netherlands
3Department of Respiratory Medicine, Maastricht University Medical Centre (MUMC+), Maastricht, the Netherlands
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Abstract

Background It remains unknown whether and to what extent members of online long COVID-19 peer support groups remain symptomatic and limited over time. Therefore, we aimed to evaluate symptoms in members of online long COVID-19 peer support groups up to 6 months after the onset of COVID-19-related symptoms.

Methods Demographics, symptoms, health status, work productivity, functional status and health-related quality of life were assessed about 3 and 6 months after the onset of COVID-19-related symptoms in members of online long COVID-19 peer support groups.

Results Data of 239 patients with a confirmed COVID-19 diagnosis (83% women; median (IQR) age: 50 (39–56) years) were analysed. During the infection, a median (IQR) of 15 (11–18) symptoms was reported, which was significantly lower 3 and 6 months later: 6 (4–9) and 6 (3–8), respectively (p<0.05). From 3 to 6 months follow-up, the proportion of patients without symptoms increased from 1.3% to only 5.4% (p<0.001). Patients also reported a significantly improved work productivity (work absenteeism and presenteeism: 73% versus 52% and 66% versus 60%), self-reported good health (9.2% versus 16.7%), functional status (Post COVID-19 Functional Status scale: 2.4 (0.9) versus 2.2 (0.8)) and health-related quality of life (all p<0.05).

Conclusion Although patients with confirmed COVID-19, who were all members of online long COVID-19 peer support groups, reported significant improvements in work productivity, functional status and quality of life between 3 and 6 months follow up, these data clearly highlight the long-term impact of COVID-19, as approximately 6 months after the onset of COVID-19-related symptoms a large proportion still experienced persistent symptoms, a moderate-to-poor health, moderate to severe functional limitations, considerable loss in work productivity, and/or an impaired quality of life. Action is needed to improve the management and healthcare of these patients.

Footnotes

This manuscript has recently been accepted for publication in the ERJ Open Research. It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJOR online. Please open or download the PDF to view this article.

Conflict of interest: Dr. Vaes has nothing to disclose.

Conflict of interest: Dr. Goertz has nothing to disclose.

Conflict of interest: Dr. Van Herck has nothing to disclose.

Conflict of interest: Dr. Machado has nothing to disclose.

Conflict of interest: Dr. Meys has nothing to disclose.

Conflict of interest: Dr. Delbressine has nothing to disclose.

Conflict of interest: Dr. Houben-Wilke has nothing to disclose.

Conflict of interest: Dr. Gaffron has nothing to disclose.

Conflict of interest: D. Maier reports Biomax provides data management and analysis services to CIRO.

Conflict of interest: Dr. Burtin has nothing to disclose.

Conflict of interest: Dr. Posthuma has nothing to disclose.

Conflict of interest: Dr. Van Loon has nothing to disclose.

Conflict of interest: Dr. Franssen reports grants and personal fees from AstraZeneca, personal fees from Boehringer Ingelheim, personal fees from Chiesi, personal fees from GSK, personal fees from TEVA, outside the submitted work; .

Conflict of interest: Dr. Hajian has nothing to disclose.

Conflict of interest: Dr. Simons reports personal fees from AstraZeneca, grants from GSK, outside the submitted work.

Conflict of interest: Dr. Van Boven has nothing to disclose.

Conflict of interest: Dr. Klok reports grants from Bayer, grants from Bristol Meyer Squibb, grants from Boehringer-Ingelheim, grants from MSD, grants from Daiichi-Sankyo, grants from Actelion, grants from the Dutch thrombosis association, grants from the Dutch Heart foundation, grants from the Netherlands Organisation for Health Research and Development, outside the submitted work.

Conflict of interest: Dr. Spaetgens has nothing to disclose.

Conflict of interest: Dr. Pinxt has nothing to disclose.

Conflict of interest: Dr. Liu has nothing to disclose.

Conflict of interest: Dr. Wesseling has nothing to disclose.

Conflict of interest: Dr. Spies has nothing to disclose.

Conflict of interest: Dr. Vijlbrief has nothing to disclose.

Conflict of interest: Dr. Van't Hul has nothing to disclose.

Conflict of interest: Dr. Janssen reports personal fees from AstraZeneca, personal fees from Boehringer-Ingelheim, personal fees from Novartis, outside the submitted work.

Conflict of interest: Dr. Spruit reports grants from Lung Foundation Netherlands, grants from Stichting Astma Bestrijding, grants and personal fees from AstraZeneca, grants and personal fees from Boehringer Ingelheim, outside the submitted work.

This is a PDF-only article. Please click on the PDF link above to read it.

  • Received March 3, 2021.
  • Accepted March 9, 2021.
  • Copyright ©The authors 2021
http://creativecommons.org/licenses/by-nc/4.0/

This version is distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0. For commercial reproduction rights and permissions contact permissions{at}ersnet.org

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Recovery from COVID-19: a sprint or marathon? 6 months follow-up data of online long COVID-19 support group members
Anouk W. Vaes, Yvonne M.J. Goërtz, Maarten Van Herck, Felipe V. C. Machado, Roy Meys, Jeannet M. Delbressine, Sarah Houben-Wilke, Swetlana Gaffron, Dieter Maier, Chris Burtin, Rein Posthuma, Nicole P. H. van Loon, Frits M. E. Franssen, Bita Hajian, Sami O. Simons, Job F. M. van Boven, Frederikus A. Klok, Bart Spaetgens, Claire M.H. Pinxt, Limmie Y.L. Liu, Geertjan Wesseling, Yvonne Spies, Herman Vijlbrief, Alex J. van't Hul, Daisy J.A. Janssen, Martijn A. Spruit
ERJ Open Research Jan 2021, 00141-2021; DOI: 10.1183/23120541.00141-2021

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Recovery from COVID-19: a sprint or marathon? 6 months follow-up data of online long COVID-19 support group members
Anouk W. Vaes, Yvonne M.J. Goërtz, Maarten Van Herck, Felipe V. C. Machado, Roy Meys, Jeannet M. Delbressine, Sarah Houben-Wilke, Swetlana Gaffron, Dieter Maier, Chris Burtin, Rein Posthuma, Nicole P. H. van Loon, Frits M. E. Franssen, Bita Hajian, Sami O. Simons, Job F. M. van Boven, Frederikus A. Klok, Bart Spaetgens, Claire M.H. Pinxt, Limmie Y.L. Liu, Geertjan Wesseling, Yvonne Spies, Herman Vijlbrief, Alex J. van't Hul, Daisy J.A. Janssen, Martijn A. Spruit
ERJ Open Research Jan 2021, 00141-2021; DOI: 10.1183/23120541.00141-2021
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